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.