Seven Days and Counting. . .

a little r and r

7/30/2011:  8:45 AM

Let's see. . . .Where did I leave off? 

Davis's best day of the week is Thursday. Thursday afternoon, he floated around the pool a bit. He even thought it would be fun to float around with cucumber slices on his eyes. That lasted for all of a minute and a half.  And the temptation of food kicked in, and he ate them. Well, I guess they served a purpose one way or another.




best buds



Thursday evening, one of Davis's best buds was having a little get-together. Davis's ANC was high enough and the party was outdoors, so Davis decided to go for a little bit. It just amazes me how his sickness melts away when he is in the company of his friends. They had a great visit; they just picked up where they left off last. I love that friendship is blind to weak muscles, incision scars, rounding faces, and hair loss. And as hard as we try to boost Davis's spirits, friends do so without effort. They are such blessings to him.





chemo

We are fortunate that Davis has developed a routine going to and coming home from St. Louis: sleeping. Sleeping aids with the carsickness. The doctor's appointment went well. The only time Davis appeared very nervous yesterday was when the nurse accessed his port. I wished to take a picture of the actual needle and tubing for the blog, but Davis refused. Maybe next time. They do a CBC test before giving Davis his chemo to determine if Davis needs any red blood cells or platelets.  An hour later (yes, it takes some time to get lab results back), the nurse asked me if Davis had been experiencing headaches and tiredness. Yep. All tell-tale symptoms of a drop in hemoglobin. Davis's doctor decided it would be best to transfuse him because this week's chemo will further drop his counts. The transfusion added a couple of hours to the day, but Davis didn't mind because he loves getting blood. It perks him up considerably and makes him feel stronger. Overall, his counts were pretty good.  His white blood cells were up to 1 from .5 (healthy children are between 5 and 10), and his ANC had dropped from over 900 to 600 (healthly children are over 1500).



chicken strips and

blood . . .yum

We were finally on our way home at 3:00 PM.  Davis, despite not feeling well, remained pretty composed. We watched a movie (Elf, one of our favorites!) which passed the evening quickly.  Davis slept peacefully after the long day.



We have now started the countdown.  We reminded Davis that he only have seven more days of the Prednisone - the medication he loathes. He will have to take it later down on down the road, but it won't be for 28 days in a row. Thank goodnesss.

heading home

Next Friday is the day for which we have been believing and praying. Davis will undergo a bone marrow biopsy and spinal tap again. This will determine if he is in remission. If so, we move on to phase two of chemo, which will last for a minimum of 6 1/2 months. We know very little about phase two because it is created based on the results of the biopsy that is scheduled for this coming Friday. The doctor assured me that when she knows something, I will know something.


We continue to ask for your prayers.  We pray for our short term goals: remission, tolerance to medication, no bacterial or viral infections, no fevers; and our long term goals: no long term side effects, CURE! And we thank you in advance for your uplifting support, positive thoughts, and prayers. We are humbled to know that we cannot do this without GOD and the encouragement of our family and friends. 

Looking forward to a weekend of rest and recovery.

We will keep you posted.



Mixed Up Nights and Days

7/28/2011:  3:43 PM



ahhh, nap time

I hope Davis hasn't started a new routine. The last couple of days, Davis has experienced some great spurts of energy. The Vincristine (chemo med) has ran its course, and Davis's muscle weakness and leg pain have subsided.  However, after these spurts of energy, he crashes. He willfully takes 1-2 hour naps. No problem. But last night, Davis was awake three or four different times. He would kindly wake me up to tell me all about his dreams, or to see if he could get something to eat, or to see if it was time to get up yet.  Needless to say, this sleep-all-day and up-all-night routine reminds me very much of having an infant. 



almost like real camping. . .
almost

On Tuesday, we received word that Davis's blood count was bouncing back.  On Friday, his ANC (immune system) was only 80.  (Reminder: Healthy children are above 1500, and anything under 500 is considered critical. Davis was over 3000 when admitted to Children's.)  His ANC on Tuesday was a little over 900!  Wow!  And all of his other numbers (red, white, platelets) were up a bit.  The nurse said it is very common for the numbers to fluctuate this much during the induction phase. 

Tuesday evening, Grandma and Grandpa Coffey came over for a camp fire roast.  Davis had a great time playing around the camp fire and visiting with people other than us. Although it was brief, it was enough to boost the spirits.

online shopping?

Despite feeling well, Davis is extremely pale. He will joke around and say, "Man, Mom. I need to lay out today; I am really pale."  I jump on the opportunity to get him outside in the pool, but he withers pretty quickly in the heat, and after five minutes, he is ready to head back inside. His hair continues to fall out, but he still has a ton of it. His ultra super thick hair is finally working to his advantage.



a little overdressed for swimming

Davis is taking his medicine without complaint now. Oddly enough, we have decreased his acid reflux and nausea medicine, and his reflux and nausea have decreased considerably. Davis will actually ask me if he can take his medicine, so he can get it out of the way.  What a change from a couple of days ago.  We will see what the weekend has to bring.

 We are amazed at the prayers being lifted up for Davis all over the nation and the world.  We were aware of some friends praying for Davis while on a mission trip in Uganda, and we know our friends, the Halls, are praying in Japan. We actually received a care package with Japanese candies and toys yesterday.  I was the only one brave enough to eat anything. Ummm. What I tried tasted like wet cat food. Something different to sample today, perhaps. :) We love and appreciate all of your prayers.  I am saddened for those who are going through similar situations and lack faith, family, and friends to lean upon. I can't even imagine . . .



"Mom, if I smile, will you
leave me alone?"



We want to thank all of you who continue to remember us in your actions and thoughts. We thank all of those who have provided meals over the last couple of weeks. I have only had to cook the incidental food that Davis craves:  corn dogs, chicken nuggets, and pizza rolls. We receive cards, phone calls, and texts filled with encouragement daily. We have even had a few visitors who don't mind standing outside on the front porch in the heat for a little chat.  We are forever grateful for your kindness. 

Tomorrow will be Davis's last chemo treatment before the bone marrow biopsy (Aug 5) to determine if he is indeed in remission. We are believing that he will be. He will then begin the second phase of chemo. We pray for remission and CURE!!  We ask that you do the same.

We will keep you posted.

Painful to Perfect

7/25/2011:  11:20 PM

This morning was awful. Davis woke up with an upset stomach, took one medication, and then refused to do the rest.  Kyle stepped in. After a ton of persuasive coercion and Kyle's you're-going-to-take-this-medicine-now approach, the medicine was in, and the day improved.

a couple of bums

clay masterpiece

By afternoon, Davis was feeling - and acting - like his old self again. A good majority of the afternoon was spent hearing Annakate scream as Davis chased her around the house. Ocassionally, they would make a truce long enough to watch a little TV and eat a snack.

After supper, it was time to get our creative juices flowing. Davis worked in clay for awhile and changed his mind shortly thereafter. Mrs. Hess, Ashmore art teacher, and Ashmore School sent art supplies to play with, so both Davis and Annakate tried their hands at sketching.

art mania

outside . . . finally!

Davis couldn't bring himself to get in the pool this evening, but he did try. He is much more content sitting in the recliner inside, but we value fresh air and outdoors.  We made him hang outside for awhile before heading in.  I think it did him some good.



That brings us to tonight.  Davis set up a party in the living room.  He poured cokes and pulled out his puffed Cheetos.  Annakate grabbed the boombox and a quick dance party was underway. I loved it. The only reminders of cancer were the visible port in his chest and the medicine still needing taken.

crazy!

This week is all about routine. Kyle thinks that Davis will benefit from some more structure, and I agree.  Davis slept in his own bed last night - the first night in weeks.  (He has been sleeping on an air mattress in the living room.) We have started eating our meals at the kitchen table as a family once again. Tomorrow, he will get up at a decent hour and take all of his medications before a pre-determined time. We want to get him in a consistent routine to prepare him for school. 

new hat

We have noticed a tad bit of hair loss. Although Davis still has a full head of hair, he has noticed if he grabs his hair or rearranges it, he loses 20-50 or so little pieces. No worries though. He received a couple of new hats in the mail, and has a few baseball caps as well. I know that this is hard for him, and I keep reminding him that it is temporary. 

Tomorrow we will head over to Sarah Bush for our weekly CBC.  Again, the routine. We are hoping for a stability or climb in numbers. This could mean that he has nadired (a medical term meaning that his counts - his blood - have bottomed out or reached the lowest point).  The idea is to wipe out nearly everything (white, red, platelets, neutrophils, etc) and allow his system to rebuild healthy blood.  I dread Friday because it means another round of chemo, but I know that each chemo treatment brings us closer to remission and closer to being cured. And yes, as most parents with a child with cancer, the cancer is very much ours.  We are fighting this battle as a family. 

We continue to love and appreciate all of the support we have felt from family, friends, and neighbors this week.  We are so very blessed.  We continue to ask for positive thoughts and prayers because the road ahead is still very hard and long.  I pray every day that God gives Davis strength and builds a hedge of protection around him. We pray for short term goals (remission) and extremely long term goals (no long term side effects, forever CURED!).  We are trusting that you are doing the same.  May God richly bless you and your family.

We will keep you posted.

Easy Breezy Weekend



sick of mom taking pictures
or just sick



7/24/2011:  4:00 PM

I am not going to sugarcoat it. Friday night was rough.  Davis cried for well over an hour and he refused to take his medication. Kyle and I tried our good cop/bad cop routine for awhile, and eventually, I just called his hemo/oncologist for a what-do-I-do pep talk. Amazingly, within thirty minutes, Davis had regrouped and was ready to take his medication despite a horrific stomach ache. We did not need to take him to the ER or give him anti-anxiety medication as the doctor had recommended.

Overall, it has been a pretty peaceful weekend. Davis still hates taking his medicine, but he does it. He continues to have very little energy, so 99% of his time is spent in the recliner or on the little blow-up mattress that is set up in the living room. He detests his new acid reflux medication, so he opts to control what he eats to cut down on the reflux.  This allows him to cut his dose from twice a day to once a day. He has definitely experienced a crash course in real-life cause-and-effect situations.

plain fun

Davis has struggled with muscle weakness in his legs due to one of the chemo medications. We noticed it on Friday. He could barely walk; and when he did, he was slow and awkward.  It was as though he had to will his legs to work. We have noticed that today his legs appear to be working a bit better. Amazingly, he has no mouth sores or hair loss . . . yet. He does continue to lose weight despite eating all of the time. The doctors don't seem to be nervous, but he is quite thin. Davis has been so fortunate to have not experienced some of the more serious side effects of his chemo; he is blessed.

feeling better today

Kyle was the preacher this morning as I went to church.  Kyle and I rotate services.  I was outdone from my service last week. Kyle actually broke out a microphone for song service. When Annakate and I came from church, Kyle and Davis told me all about their church service.  Kyle taught on the story of Jacob. Davis said, " Yeah, if I am like Jacob, I can have two wives in fourteen years." Hmm.  Davis is either super funny or he completely missed the point of the lesson.  I am assuming the former. :)

We continue to hang out at home and watch all the Disney and Nickolodean shows we can stand. I can't say that I mind all of the quality time we get with one another; I just wish it was under different circumstances. We are believing for remission on August 5th, and wish that you would continue to pray with us. God responds to faith. We firmly believe that Davis would not be doing as well as he is without your thoughts and prayers, and we are forever grateful for your kindness.

We will keep you posted.

The First Light at the End of a Long Tunnel

7/22/2011:  5:00 PM



taking advantage of an
opportunity to snuggle



Yesterday. . . PRAISE REPORT! Dr. Barone, Davis's primary oncologist, called us yesterday with fantastic news. At diagnosis, Davis had 80% of cancer blasts in his bone marrow.  After one week of chemo, Davis had less than 20%.  He is responding well to the chemo.

Today . . . We just made it home from St. Louis. Our day started at 5:30 AM, and we are finally home after a long day of . . . well, after a long day.  We met with Davis's hemo oncologists first thing. There were some changes and additions to his medications. Most of the changes and additions were to beef up medications to help with his nausea and acid reflux. 

not thrilled in
clinic waiting room

Davis was very nervous about accessing his port.  The nurses talked him through everything they did.  He was so brave. He did experience some discomfort - pain - because the port site is still healing and is very tender.  After Davis's port was accessed and blood was drawn for a CBC, we were allowed to go to the chemo lounge. Chemo patients are given recliners to sit in while undergoing treatment. Chemo treatment can't begin until the CBC is back from the lab. The doctors need to make sure that Davis's blood counts are strong enough for him to endure the chemo.  If not, he would need to undergo transfusion(s) first.



the doc's on
her way



They began chemo not too long after we had eaten lunch in the chemo lounge. The nurse went over his CBC draw with us.  I was not at all prepared with the numbers that she gave us.  It is quite amazing how blood count numbers fluctuate so quickly and often with a cancer child on chemo.  Davis's white blood cells were down to a whopping .5. (Healthy kids range from 5.0 - 10.0.)  This is to be expected because the cancer is in the white blood cells.  His ANC (immune system basically) was 792 on Tuesday, and healthy children are above 1500.  Davis's ANC today was 80.  The doctors and nurses reassure us all of the time that children manage just fine daily with ANCs of zero, but it still makes us a tad bit nervous.  Needless to say, it definitely looks like we are on lockdown until his numbers start bouncing back.  

and let the chemo begin

We have discovered that the couple of days following Davis's big chemo treatments are the worst.  So far, despite not feeling well, he is managing to eat a little and complain a little less. I am assuming that we may start to see more effects (loss of hair, mouth sores) from the chemo since we are now three treatments into induction. We are praying that the side effects, whatever they may be, are minimal and non-damaging.

 The date has been set. August 5.  Davis will have one more week of IV chemo (next week), and on August 5th, he will have another bone marrow biopsy and spinal tap to see if he is indeed in remission.  We are believing and praying for remission and a CURE on that day.  We have seen great healing already. We continue to ask for your support and prayers for Davis. The Bible states:  (Matthew 21:22) And all things, whatsoever ye shall ask in prayer, believing, ye shall receive, and (John 14:14) If ye shall ask any thing in my name, I will do it. We are asking in prayer and believing that God is healing our son.

We will keep you posted.

 

Heartburn? Not Suprised.

7/21/11:  9:00 AM

breakfast



I am blaming the Predizone once again.  Davis eats non-stop.  If I am busy and ask him to wait, he gets up and gets food for himself.  I must say it is nice to see him get up and walk around. Davis consumed a turkey sandwich, a corn dog, spaghetti pie, two lunchables, crackers, and over 40 ounces of lemonade all before noon. His eating continues all day long. His every thought revolves around food.  It was no surprise that the Zofran and Pepcid he takes for nausea and acid reflux associated with his chemo couldn't keep up. He had horrible acid reflux - yet another new feeling for this ten-year-old.



snack


Davis and I spent some time looking online at what one should eat and what one shouldn't eat to control acid reflux. Nearly everything he ate over the course of the last couple of days causes reflux. Everything he should eat to control reflux sounds gross to him, so we are trying to find the balance. 

brunch

I have tried to interest him in other things, like legos, to keep his mind off of food.  So far it isn't working.

Overall, I could not ask for a better day. Davis is feeling much better, and he is even back to pestering Annakate.  Although he has developed a complicated routine when taking his medicine, he doesn't fight us anymore. 



an early lunch



Tomorrow will be a big day, and Davis is dreading it. He doesn't want to do the five hour round trip, and I can't say that I blame him. He fears carsickness a bit still. He knows what is coming with the chemo treatment and can't stand to think about being sick all weekend.

dessert?

Please pray that all goes well tomorrow.  And please continue to pray and believe with us for remission and cure in 15 days.  15 days, wow!

Well, we will keep you posted.

Fear of the Firsts

7/19/2011:  9:39 PM

giving blood like a pro

Davis has a fear of the firsts of everything, and the first blood test at SBLHC was no exception. He prolonged it until lunch time.  He wasn't afraid of the actual finger prick at Sarah Bush; he was afraid of the car ride. He experiences car sickness (yet another new feeling) and hates getting into a car.  Nevertheless, he sailed through it all today.  So well in fact, I had to run into Planet Wiener to get him a celebratory hamburger and cheese fries.

One of the nurses from STCH called with his CBC results a few hours later. Davis is doing a great job producing his own red blood cells.  His hemoglobin has been fairly low since diagnosis.  It hovers around a 7.0 (Healthy children are 15 or above). Red blood cell transfusions bring him up a couple of points and then it slowly falls. Well, today Davis's is over 10.  However, his platelets have dropped off. He is still a far way off from needing a platelet transfusion, but low platelets better explain why he bled so much when he had his blood drawn. His ANC (immune system) has dropped below 800 (higher risk for infection) so we continue to be cautious with visitors and going places.  Luckily, Davis is very much a homebody, and he is perfectly content watching cartoons and sitting in the recliner all day.

After stating all that information about Davis's counts, I think it is important to remember it is all relative. Since the chemo kills both bad and good parts of his blood, the numbers will continue to drop and fluctuate.  The information the numbers provide us is more important. We need to know when he needs transfusions to keep his body working properly, and we need to know what his ANC is to protect him against bacteria and germs.

A couple of questions answered. . . I have been asked a couple of questions over and over, so I thought I would clarify.

a good day - a fake smile

We are very much believing for remission in 19 days.  However, the journey doesn't end there. In order to be in remission, Davis has to have less than 5% of cancer cells present in his bone marrow. We are praying for remission, but remission doesn't mean that Davis is cured. We are trusting in God, the doctors, and the medicine to put Davis into remission, but we are fully concentrating our prayers and faith in God for his cure. As cancer survivors know, health professionals are hesitant to state that someone is "cured" of cancer, because the chances of relapse are so great. Davis's greatest risk for relapse are in the first three years. If he is still in remission after year five, his chance of relapse drops considerably. If he hasn't relapsed after ten years, his odds of relapse are even less. We feel we serve a mighty God - a healing God - who will CURE Davis in 19 days.

Leukemia is cancer of the blood.  (In Davis's case, cancer of the T-cell in the white blood cells.)  Therefore, the cancer is all over the body because the blood is all over the body, so it isn't staged as many of the cancers are. Sometimes Leukemia travels outside of the blood and can cause tumors. We are fortunate - and blessed - that Davis's cancer remains in the blood.

Another movie night in the Coffey house. Davis is feeling great, so all is well. We appreciate your positive thoughts and prayers as always.  We ask that you earnestly pray for remission and CURE in 19 days. Thank you in advance.

Keep you posted.

Each Day - A Little Easier

7/19/2011:  8:00 AM

davis and nurse annakate

What a difference a day makes!  Davis is feeling considerably better (at least by my standards). He is sleeping soundly, and although the tummy ache is always there, it is tolerable. He doesn't fight us as much when it comes to taking his medication, but he isn't necessarily compliant either. But it does seem that each day is getting better.



Yesterday, we noticed quite a large lump to the left of the spot where he had his last spinal tap.  We called the hemo/oncologist clinic out of concern.  They were not concerned. We do have to keep an eye on certain symptoms: redness around lump, hot to the touch, fever, pain. He is not exhibiting any of these symptoms, so they reassured us not to worry.  They plan on checking it out when Davis gets his chemo on Friday.



the appetite is back



Today, Davis is going to SBLHC to get some blood drawn.  Sarah Bush will run a CBC count on his blood and call it over to St. Louis.  St. Louis will call us with the results today or tomorrow. If his red blood cells or platelets are low, we will head over to St. Louis for a transfusion.  I can't imagine that being the case, because Davis looks pretty good to me.

We are still going to great lengths to keep Davis safe from as many germs as possible.  Lysol is my new best friend.  We also have a new habit of showering after visits around bunches of people (church, Wal-Mart, etc.). Laundry has really increased too.

Speaking of increases . . . Davis's appetite. Despite having an upset stomach, this kid eats all of the time. I can't really get him to eat sweets or fruits; he craves heavy, sodium-filled foods. He is eating cheesy mashed potatoes covered in pepper for breakfast. At midnight last night, he ate two pieces of Canadian bacon pizza. Of course, Annakate doesn't like or want anything that he is craving, so we eat different meals. I am a bit surprised that despite eating food now, he is terribly thin. He is practically skin and bones. The mother in me just wants to fatten him up



cartoon tuesday



Davis's spirits are improving and his anxiety is decreasing. He still continues to receive a great deal of cards and texts full of concern and encouragement. My Oakland family helped his spirits quite a bit yesterday. My friend Marla, a cancer survivor with whom I work, wrote Davis a really touching letter.  She reminded him that cancer is not the "Big C"; it is a little c because we put our trust in Christ, who is the "Big C".  Nearly every day before school last year, Davis, Annakate, and I would pray for Marla and Pam (another Oakland cancer survivor), and now these ladies are praying for and encouraging him. The Meyer family stopped by (well, just the Meyer ladies) and brought us a spaghetti meal, which will be lunch today. Davis can't wait. 

We continue to thank you all for all that you do.  We are still praying and believing for complete remission forever at the end of induction. We also ask that you continue to pray for his strength. He is doing comparatively better than most children at this stage, so we know the prayers are working. We are praying against side effects as well.  It seems Davis just starts feeling better, and then he is pumped full of more chemo.  We love and appreciate your support, encouragement, and prayers.

We will keep you posted.

On the Upswing

7/15/2011:  3:48 PM

I think we are on the upswing.  My guess is that a bunch of people prayed for Davis all at the same time this morning because he is feeling exceptionally better. Davis has managed to eat today, and boy, is he eating!  He has eaten a piece of cheese pizza, a bowl of Pagliai's spaghetti, and two corn dogs.  He wants another, but we are holding him off until he adjusts to his new nausea medicine. 

He is more of a conversationalist today, and he has smiled more today than I have seen in days. I can't tell you how awesome it feels to see him smile. 

Well, church at home wasn't much like the real thing.  I did my best.  I made it very clear this morning that I am no Casey (a worship leader and piano player at our church).  I haven't really  mastered the whole singing and playing the piano thing, so I gave up on the music.  The sermon - and I am using the term loosely - consisted of mostly healing scriptures.  Davis seemed to enjoy it (partly because it was only ten minutes long).

The rest of the day has been filled with Scooby Doo marathon.  It feels like I have seen every Scooby Doo ever made, and nevertheless, I am still awful at predicting the culprit at the end. Davis gets is right nearly every time; it must be a kid power that I have outgrown.

Well, we are praying that Davis's good feeling streak continues.

I am going to conclude with some of the scriptures that were in my lesson this morning.  I often reference these in an effort to keep them close to my heart. Plus, I wanted to post some pictures of Davis on the upswing. :)

Psalm 103:3
Praise the LORD, O my soul, and forget not all his benefits--who forgives all your sins and heals all your diseases.

Psalm 107:20
He sent forth his word and healed them; he rescued them from the grave.

Psalm 118:17
I will not die but live, and will proclaim what the LORD has done.

Mark 11:23-24
"I tell you the truth, if anyone says to this mountain, `Go, throw yourself into the sea,' and does not doubt in his heart but believes that what he says will happen, it will be done for him. Therefore I tell you, whatever you ask for in prayer, believe that you have received it, and it will be yours.

Keep you posted.

An Uneventful Routine

7/17/2011:  10:13 AM

recliner

 We have fallen into a routine. The routine has been established around Davis's medication schedule. We devote a couple hours in the morning and a couple hours in the evening to getting Davis's medication in him.  The rest of the day, we just tend to Davis and hang out with Annakate.

Davis doesn't move around much. He has planted himself in the recliner.  Last night, we made him sleep on an air mattress. For some reason, he doesn't want to sleep in his own bed. When morning hits, he is back in the recliner.  Kyle does make him get up and walk a loop around the living room when he gets up to use the bathroom. 

While in the hospital, the doctors kept reminding us that Davis would eat us out of house and home and would be irritable because of the Prednisone. We definitely have seen all shades of irritability from Davis, but since we have been home, his appetite has diminished. Yesterday, he had a cup of spaghetti, a handful of crackers, and 7 blueberries. Today, he has eaten considerably less - a cracker. We do push the fluids, but he will only drink water (We are making him drink a juice box right now.) And although he is on anti-nausea and acid reflux medication, his stomach hurts all of the time.

air mattress



I called the doctor this morning to see if there was a concern for the lack of food intake and fluid intake reduction.  The doctor feels that Davis knows his body best. He did prescribe Davis some additional anti-nausea medication.  Great. More medicine. We are thankful that there are medications out there to help control and maintain the side effects; Davis isn't as thankful. He is already sick of taking meds. What's two more, right? 



I must say that I do miss getting his CBC counts every day. That was a perk of the hospital stay.  We assume his ANC (immune system count) is below 1000 now, which means he is at higher risk for developing a viral or bacterial infection. And obviously, his other numbers (white blood cells, hemoglobin, platelets) are still dropping. We should know where he stands on Tuesday. He is scheduled to get his next CBC read then.

Our goal for getting out of the hospital was to get him to "Water Sunday" at church. The doctor thought that Davis's counts were still good enough for him to attend the outside portion of the special event.  He has looked forward to it all week.  Sadly, he is just too sick to go. To Davis, it is one thing to be sick, and it is another to be sick in front of his friends. So here at home we sit. I am getting ready to host our own little church service here. If he is not too grouchy and plays along, I will be worship leader and minister.  If he doesn't tolerate my service well, I will get right down to the lesson.  :) 



back to recliner



We continue to be so moved with all of the encouragement, positive thoughts, and prayers being sent our way. The outpouring of support is amazing. We couldn't imagine better family and friends; you are such a blessing.

We are still believing for everlasting remission in 20 days. (We are on Day 9 of chemo.)  We continue to pray for Davis's health in the meanwhile. Chemo, although great treatment, is nasty; we are fortunate and so very thankful that Davis's has tolerated it seemingly well thus far. We still pray off fevers daily, as they are signs of infections. We ask that you pray the same, and we thank you in advance.

Enjoy this beautiful July day. We will keep you posted.

Home Sweet Home

7/15/2011:  10:20 PM

taco time

Well, we made it. We made it through the tests and procedures and the long drive home.  I figured this morning would be a little rough because Davis had to take all of his normal medications but could not consume much water to rinse the horrible taste down or food to absorb the meds. God touched him, and miraculously he kept them down. 

He was off to the procedure center at 10:30 this morning. Davis becomes very nervous about the "falling asleep" part.  They allow us to stay with him until he is unconscious.  The first time he was put under, he was counting. Today as he fell asleep, he was talking about tacos and spaghetti. He had talked about wanting tacos all morning, so when he was getting his procedures done, Kyle ran to Taco Bell and bought him tacos.

Davis sailed through the biopsy and tap.  He was back in his room by 1:00 PM.  He managed to devour four tacos before Kyle jumped in to pace him.  The Predisone makes him hungry and all the other meds make him sick to his stomach. Tacos are not pleasant coming up, so even though he wanted more tacos, we decided four was enough.

mr. dan and davis

Shortly after 2:00 PM, Davis was given his IV chemo injections. With only an upset stomach and headache as his side effects this afternoon, he tolerated the chemo pretty well. 

Mr. Dan, the Ashmore custodian, dropped by for a visit. His wife was seeking treatment at Barnes.  It was quite a surprise to see him today! Davis loves Mr. Dan, as do all of the kids at Ashmore Elementary.

The hospital began to feel more like home before we left.  The Markleys, a family from Ashmore, were a few doors down seeking treatment for their son's illness (not cancer), and our roommate and family were from Rantoul. 

We managed to leave the hospital before 5:00 PM.  Davis suffered from some motion sickness as Kyle maneuvered through the city traffic.  Davis eventually fell asleep and slept until we were almost home.

Home Sweet Home . . . There is nothing like it. Kyle's Aunt Melinda and Aunt Shirley, mom, Grandma Hawkins, my nieces, and Annakate cleaned/sterilized the house. I am so grateful. That allowed us to come right in and focus on care for Davis. Unfortunately, Davis isn't well enough to really enjoy the comforts of home. Our kitchen table has become a make-shift pharmacy.  Davis takes nearly ten different medications.  I measure the amounts and then record the times in which he takes them to create a record. If he becomes sick, I know which medications will have to be repeated.  Most of the medications are to control side effects of the chemo.

finally home!

We didn't realize how much we missed Annakate until now. We are proud of her. She has been so patient and understanding through this. Before the diagnosis, she was definitely our high maintenance child. She just demands more attention than Davis. Davis spends hours playing with legos or bakugons in his bedroom by himself, and Annakate wants to play with us. She seems to understand that Davis needs us now. We by no means neglect her, and we try to give her as much time and attention as we can afford. We are still adjusting to the new normal.  We are just so thankful to be a family again.

We are looking forward to spending a great deal of time at home. Davis is nearly homebound. The risk for infection from germs is too great as his numbers continue to drop. Because of his blood transfusion, his hemoglobin was up to 9.4, but all other counts are falling. We are going to great lengths to keep home safe and sanitary for him. 

Davis will have blood drawn for a CBC panel at the beginning of every week here locally. This will help us monitor his counts. Sarah Bush will contact SLCH, who will contact us. It is very likely that we will have to go down to St. Louis on occasion or weekly for red blood cell and platelet transfusions. We will also be going to St. Louis every Friday for chemo treatments and doctor's visits.

We are happy to be home. This in itself is an answer to prayers. Many children never leave the hospital during the induction phase, and we are fortunate to go home on Day 7 (of 29 days). We still need prayers. Davis is still trying to come to terms with his sickness.  He is very emotionally vulnerable when he feels the worst. He still seeks understanding. I have no answers. I feel like I offer him the same encouragement over and over again. After the anger and sadness subsides, and another wave a nausea hits, he just closes his eyes and whispers, "Mom, just pray for me. Please pray right now." And I do. I pray my guts out. And then he is better. We know that God is always with us, but sometimes He feels close enough to touch - to hold.

We are forever grateful for all of the prayers, positive thoughts, and encouragement that we have received thus far. We wouldn't be where we are right now without them.  We are still praying and believing for remission in 23 days.

Thank you in advance for your continued prayers.  Keep you posted.

Homeward Bound



7/14/2011:  11:20 PM

We have survived yet another roller coaster of a day. Davis is still struggling to get down medication. It seems rough in the morning, then the day runs pretty smoothly (no meds) with only nausea.  Early evening into the night is when it gets down right rotten. Davis still struggles with the nausea and adverse reactions to taking the medicine. We try to reassure him that this part of the medication will be over in 24 days, but 24 days is an eternity to a ten-year-old. I hate that he knows that sickness is coming every night. 

peacefully sleeping

Today was ok. Davis did receive a blood transfusion, which he was very excited about. We were all hoping that it would help him bounce out of this funk and restore him with energy, but that hasn't happened yet. The transfusion today served two purposes: raise blood counts for his bone marrow biopsy and spinal tap tomorrow and raise his blood count for his trip home.

The hemo/oncology social worker hosted a coping class for parents. Although the actual coping class didn't provide a ton of information, talking with other parents was beneficial. I find it fascinating how we connect with other families in similar situations. Since we have been here, we speak a new medical language that very few understand. I have grown accustomed to talking in medical acronyms and comparing vitals and CBCs with other parents. I guess it is part of the "new" normal that is constantly referenced.

We talked with the school liaison today. She will help us obtain the necessary paperwork for Davis to attend school. The doctors really push for as much schooling as possible, and we feel the same as long as his counts are safe.



davis and nellie



As part of their pet therapy program, St. Louis Children's Hospital has dogs that visit daily. Today, Nellie the Dalmatian visited.  Davis has such a tender heart when it comes to animals, and he looks forward to the dog visits.  He even managed to get out of bed to take a picture with Nellie.

Visitors . . . . Grandpa and Grandma Coffey came as did Uncle Randy. Davis still manages to tease them, which means he's not too sick. This evening before they left, Kyle and I managed to sneak out to the Applebee's attached to the hospital.  It wasn't a date by any means, but it was so nice to walk outside. Unfortunately, we had very little appetites and just wanted to get back to the room to be with Davis.

garden visit

Davis lacks the strength to walk well. He just doesn't have the energy; plus, he spends most of his time in bed, so his legs are weak. We put him in the wheelchair this evening and wheeled him to the garden. He has adamantly avoided the garden during our stay because it reminds him of home.  But knowing that we will be going home as early as tomorrow, he didn't protest too much when we hopped on the elevator. It was so beautiful out there this evening; I just wish he felt better so he could have enjoyed it.



amy is quite the actress!  cagney too!



At one of the lowest moments tonight, our dear friend Amy Stanley sent Davis a silly movie that she and her daughter made. It was the funniest thing ever. Davis went from near tears to laughter immediately. It was so awesome. We were able to disconnect from the pain and exhaustion and enjoy a little homemade movie.  Laughter truly is the best medicine. A merry heart does good like a medicine (Proverbs 17:22).

Well, we have managed to make it to another night, and "Night at the Museum" is the movie tonight. Tomorrow may prove to be a hard day with the upcoming procedures and chemo treatments, but if he can sail through those, we will be on our way home.  I am not going to lie; I am terrified to come home.  I love the controlled setting of the hospital. But Davis wants to be home, and home is his comfort - his lifeline. Homeward bound. . . we can't wait!

We are always praying for strength and healing.  It is very easy to lose faith in a place such as this (and sadly many parents have), but our love for God continues to flow abundantly. We know that it is due, in part, to all of those who have been praying and lifting up positive thoughts on our behalf.  We ask for prayer for a good day tomorrow (no complications), a positive report (checking if the chemo is working), and a complete healing/remission in 23 days.

Keep you posted.