Information Overload

IPad makes the drive tolerable

8/5/2011:  6:00 PM

Let me lead by letting you know that Davis is in REMISSION!!!

Now let me fill you in on the day.

What a long day. We had to leave shortly after 5:30 AM to make it there by 8:30 AM for lab work, doc visit, and procedure prep.  Lab work came back pretty good. I was surprised to see that his white blood count, which has been hovering around 1.0 for the last couple of weeks, was up to 2.4. (Reminder: healthy children range between 5.0-10.0.) His hemoglobin had dropped a bit to 9.4, and his platelets were 124.  All OK to withstand his spinal chemo treatment today. His ANC (immune system) came up considerably; it is over 1100! (Reminder: optimal is above 1500)

Davis's bone marrow biopsy and spinal tap were underway at around 11:00 AM, and we were on our way home before 1:00 PM. He cried a lot while waiting for his procedure. No, not because he was in pain, not because he was scared. He was hungry. Needless to say, he ate Jimmy John's as soon as he was awake enough to eat.



yay! not losing weight anymore

While Davis was having his procedures done, we had an opportunity to talk with the staff about the next phase of treatment. If Davis is in remission, he would begin the second phase of treatment called "consolidation".  Consolidation phase is a longer phase (6+ months) that is designed to keep the cancer in remission.  He will receive chemo weekly (at times, four days in a row). There will be times when his counts (ANC and platelets) won't be high enough to receive chemo, so chemo will be postponed until his counts rise to a safe level. Understandably, chemo could last 6 1/2 months or 10 months. It all depends. The consolidation phase is best explained as knock-him-down-and-build-him-back-up phase.

As soon as we pulled in the driveway this evening, we received our much anticipated phone call from Dr. Shapiro. The preliminary results suggest that Davis is in remission!  Praise God! 0-5% cancer blasts present in the bone marrow is considered remission.  Davis was registering between 3-4%. While it was the hope that Davis would be less than 1%, we are still extremely grateful that he is in remission. Davis is considered high risk for relapse because he was treated with a round of steroids before we knew that he had leukemia. (This was back in June when we thought he had mono or some bacterial infection.) The steroids actually sped up the production of cancer cells in his bone marrow. We are awaiting the official lab results, which should come on Monday, but Dr. Shapiro felt very confident that Davis is in remission.



this is how his port is accessed. the
needle, which looks like a nail, is
visible in the clear plastic tubing



Davis will have a week off from chemo. On the 12th, we go back to start the consolidation phase.  And boy, it starts with a bang. He will receive quite a bit of chemo next Friday, and starting on Friday, he will have chemo every day for four days. This one chemo medication is notorious for making kiddos pretty sick. We are praying that Davis tolerates it better than most; he has done surprisingly well thus far. We are looking forward to our week of freedom and fun. Pending how Davis feels, we are hoping to salvage some of the summer and get out while his counts hold.

I can't express how thankful we are for all of your encouragement and prayers. Three weeks ago when we were told that Davis's bone marrow was producing 80-90% cancer cells, it seemed far from reality that he would be in remission in 29 days. But God is good to us and you have been good to us, and here we are.  I know that we are where we are - not by luck - but by the prayers and positive thoughts that have been offered on our behalf. It is humbling to know that we are so dependent on God's mercy and your kindness, and we are aware there may never be a proper way to repay all of it sent our way. The best we can do is to remember to pay it forward.

love this picture. love him more.

This journey has just begun. Although we have taken one gigantic step in the right direction, there are many obstacles ahead. As we continue to pray against short term and long term side effects, we will focus our prayers on staying in remission . . . forever. We will be praying against this "high risk" label and relapse. My last plea offered up before I close my eyes every night is part of the prayer that I pray over Davis when I tuck him in at night. It is not complicated; it is not poetic. "God, please heal my son. Please cure him." I know He will. Thank you for your continued support.

We will keep you posted.

I Stand Corrected

8/4/2011:  3:45 PM

Davis and I enjoyed an afternoon of swimming. I was tickled that he went outside and stayed outside . . . and he played. The problem:  his hair.  It was everywhere. All over him, floating on top of the water, making its way into his eyes and mouth. He decided it was time for a haircut. I gave his hair a good trim, but it seemed that I combed more out than I cut. Plus, the texture is very wiry and frizzy in spots, if that makes sense. He lost even more hair when he showered. We thought a little gel might weight it to his head.  He is sick of picking hair off of his face and out of his mouth (but I guess not sick enough to shave it). 

Maybe it is the mom in me thinking this, but even with a whole lot less hair, he is still a pretty handsome little guy.




Pre-haircut: pool fun and everywhere hair

Post-haircut: bit of a Justin Beiber do

Keep you posted.

Counting Down . .the Hours!

8/4/2011:  1:02 PM

Not a whole lot going on here.



love seeing him do
what he loves



Davis feels great and is going stir crazy. He is ready to get back to his summer:  boating, camping, slumber parties, Fair, canoeing . .  . all the things we do every summer, but haven't been able to do much of yet. He thinks he has it all figured out. He filled me in today, "After the biopsy tells us I don't have cancer anymore, I am going to the Fair on Saturday, and then on Saturday night, we are going to have a big party since I will be in remission."  I just don't have the heart right now to tell him that his plans are unrealistic. It seems I am always telling him no. I truly wish it played out that way though. The reality is that even though we are believing that he will be in remission tomorrow, his counts will still be monitored, he will still be susceptible to bacterial and viral infections, and he will still have many, many more chemo treatments. We are trying to find the balance between his old life and activities and his new life filled with medical concerns. Regardless of these new issues, as soon as his counts (blood counts - most specifically his immune system) are high enough, we plan on doing most of those things that he so loves and craves.

errand running

In the meanwhile, we continue to hang out here at home with the exception of when Davis runs errands with me. Errand running isn't really necessary, but it gives him an excuse to get out of the house but remain in a protected environment - the car. He did get to visit with his friend Wade today as I had to return some things to his mother. It was a quick visit outside, and Davis did nearly all of the talking. When we hopped back in the car, he said, "Mom, that was so fun. That was the best." Who knew that standing outside in the 85 degree heat in a driveway for ten minutes would be the highlight of his day? It dawned on him several minutes later that his friend Gage wasn't going to be in any of his or his buddies classes this year. With a concern tone, he frowned, "Mom, I am worried about Gage. He's not in our (his buddies) classes.What's he going to do?" I reassured him that Gage had many, many friends, the they would all see each other on the playground. I am just so moved that through this whole experience, Davis continues to worry not for himself but for others.  He has such a tender heart.

This is what we find
when Annakate hasn't
been properly tucked in.
Can't trust her to go to bed
on her own.



Our home routine is not routine at all. Davis fiddles on the computer or his Ipad quite a bit. We don't watch much TV as we find there is nothing of real value on (except Shark Week has provided Annakate and me with some entertainment). We continue our new tradition of movie night. Last night we watched Rango, even though Davis doesn't really care for it. Tonight, he chose Tangled. Actually, I convinced him to choose that one because I haven't watched it yet. You gotta love the power of persuasion.

Davis's physical features continue to change slowly.  His face and his belly have rounded out considerably. Side effects of the Prednisone. He continues to slowly lose weight, which is noticeable in his arms, legs, and neck. I can wrap my hand around his upper arm. I have always joked that I have man-hands, but his arms are unusually thin. I tell him he is going to have to lift weights as soon as he feels better. He is shedding. I am constantly vacuuming and changing pillow cases because his hair is everywhere. He refuses to cut it; he says, "It's going to fall out anyway." He's right. I will just keep cleaning until it has all fallen out, I guess.



big hand or tiny arm?

If all goes well (his hemoglobin and platelet counts are high enough and he has no fever), Davis will have his bone marrow biopsy and spinal tap around 10:30. We are counting down the hours to prove how God and the medicine works. We should have preliminary results by Friday evening. We are praying and believing for remission and CURE! We thank you for doing the same. 

We will keep you posted.





Ready for Routine

 8/2/2011: 2:00 PM

QQ . . couldn't be happier

Davis seems to be adjusting to the chemo more so than he has in previous weeks.  We did not see the muscle weakness and leg pain like we have in the past. And although he has severe nausea, he has only been physically sick one time. What a blessing. We have met other children at Children's who are physically sick from the chemo the moment they receive it, and some have to be hospitalized due to the side effects that they experience. We have been very fortunate that Davis has tolerated the chemo so well.

just half of the very thorough food list

The weekend was peaceful. Davis's every waking moment still revolves around food.  His latest cravings have been QQ Buffet, Jimmy John's, and Pagliai's. We manage to run to town when we can to meet his needs. We don't necessarily cater to his every food need, but it is important that he keeps eating, and there are few foods he enjoys anymore. His little gold personality has created lists of all the foods that he eats.  He has created columns and a key labeling each food good, bad, or medium.  Bad represents all of the foods that upset his stomach or foods that are off to his taste buds.  The list, four total sheets, covers the fridge and is conveniently located for us to check.



hundreds of cards

It took the greater part of the day yesterday to read all of the cards we have received over the last couple of weeks. I think I enjoyed it more than Davis. A "shout out" to the children at the Livingston, Texas Pentecostal Church who hand made Davis the most precious cards with scriptures, words of encouragement, and prayers. We feel the love from Texas all the way up here in Illinois. We can't begin to properly thank everyone for the shower of cards filled with love and encouragement.  We appreciate you all.

Davis does seem to have a bit more energy lately.  He now takes naps willingly, something I have always dreamed of since he was born, but now the appeal of willful napping has lost its oomph. I would have liked for him to nap when he was two. Oh well. Energy . . .yes. He manages to aggravate Annakate often, and I am grown accustomed once again to her yelling, "Mom, tell Davis to leave me alone!"  He is figuring how to work the system too.  Whenever he and Annakate are rough housing or wrestling, and he is losing, he starts hollering, "Ouch, my port. My port!"  She could be tickling his feet, but he will say his port hurts in an attempt to get the upper hand. She is catching on though; I am not sure how much longer she is going to fall for that one.  Needless to say, I think it is time for another lesson on "The Boy Who Cried Wolf".

night swimming . . .
isn't that a song?

Since Davis melts in the heat, we save our outside time for nighttime. Kyle managed to convince Davis that an evening swim would make him feel better. They had a great time. Me - not so much. I remained on the deck until the mosquito and horse fly action became more than I could stand.

Poor Annakate . . .
being tickled and tormented

Davis, feeling more like himself every day, is ready to get up and get out. He so desperately wants to get back to a routine: school, church, friends, lessons, etc.  He longs to go to the fair. Yesterday, I had to be the bad guy and tell him no. I even called the clinic to confirm my decision, because it is one thing to believe when Mom tells you no, it is another thing when the doctor says no. Grandma and Grandpa Coffey did bring him fair food, which brought him some comfort, but it is not the same. I know that forgoing events and places he loves is so hard, especially when he feels well, but it is what is best in the long run. I just hope he doesn't lose sight of that. 



today . . .crazy hair day at
volleyball camp

 Many have asked how Annakate is adjusting to all of this change. She is doing quite well.  Being a high energy child, there are times when she is bored, but she manages. I find myself telling her often, "hold on a sec" as she demands a lot of attention. Kyle and I make sure that we take individual time to spend with her, since her interests and abilities are much different than Davis's at this point. I am so thankful that our schedules afford us flexible time to spend with both of the kids. I think we will all do better when we have a consistent routine of school and music lessons, because we love being active and involved.

It wasn't long before Davis was diagnosed that I was telling my friends about a song that I was drawn to. I am not sure if you have heard it; it is titled "Blessings" by Laura Story. As my students can attest, I love music and have always connected emotion to it. I have always been impressed by the talents of people to catch a feeling or capture a thought in such a poetic way. Anyway, this Laura Story song ministers to me all of the time - literally. We play the song over and over again on the long trips to St. Louis. It seems whenever I turn on the radio, it is playing. And on the rough nights when I am sleeping in Davis's room, I am wakened throughout the night for no known reason, and that song is playing -always- on the radio that is never silent. If you are not familiar with it, I encourage you to check it out. I continue to find comfort in it.



Davis became super tough when Val walked in to
draw his blood

I just heard from the clinic on Davis's counts today. His white blood count is holding at 1.0 (healthy kids between 5-10); his hemoglobin responded to the transfusion on Friday and is up to 10.7 (healthy kids are around 15), which would explain the new found energy. Unfortunately, his platelets clotted, so he will have to be redrawn on Friday for a platelet count. A sustainable platelet count is important and necessary for the spinal tap he will receive on Friday. His ANC (immune system) had dropped as expected from above 600 to 461 (above 1500 is normal). But thankfully, still no cancer blasts in his blood. 

Friday is the day which we ask you really hold Davis up in prayer. If all his counts are good, he will undergo the bone marrow biopsy and spinal tap mid-morning. We should know by evening if he is in remission, and we are believing that HE WILL BE IN REMISSION. This is the first mile marker of many on his road to his CURE! We know that you will continue to offer up well wishes, positive thoughts, and prayers on Davis's behalf. And we continue to thank God for his many blessings. 

I have decided to close with a portion of "Blessings" from Laura Story.  I just love it too much not to share.

We pray for blessings, we pray for peace
Comfort for family, protection while we sleep
We pray for healing, for prosperity
We pray for Your mighty hand to ease our suffering

All the while, You hear each spoken need
Yet love us way too much to give us lesser things

Cause what if Your blessings come through raindrops?
What if Your healing comes through tears
What if a thousand sleepless nights
Are what it takes to know You’re near?

What if trials of this life
Are Your mercies in disguise?

We pray for wisdom, Your voice to hear
We cry in anger when we cannot feel You near
We doubt Your goodness, we doubt Your love
As if every promise from Your Word is not enough

And all the while You hear each desperate plea
And long that we'd have faith to believe

When friends betray us, when darkness seems to win
We know the pain reminds this heart
That this is not, this is not our home
It's not our home

Cause what if Your blessings come through raindrops
What if Your healing comes through tears?
And what if a thousand sleepless nights
Are what it takes to know You’re near?

What if my greatest disappointments
Or the aching of this life
Is the revealing of a greater thirst
This world can’t satisfy?

And what if trials of this life
The rain, the storms, the hardest nights
Are Your mercies in disguise?

We will keep you posted.

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.