Doesn't Get Better Than This . . . Relatively Speaking

9/29/2011: 9: 52 AM



some parents can't keep their kids
in shoes; I struggle to keep mine
in clothes altogether



This has been a perfect week.  Davis has done a pretty good job taking his medications without too much of a fight.  I give him a B+ for medicine taking.  His negative attitude has improved so much.  I give him an A-. 

Davis has made it to school on time nearly every day this week. In addition to improvements in taking medicine, refraining from negative talk, and making it to school on time, he continues to have a better appetite. Yep. Perfect week. Life seemed almost normal this week.

finishing touches

Davis spent a good majority of his weeknights working on a science project that was due. It turned out pretty nice. Annakate helped him paint some, and I helped by cutting Styrofoam. 


Yesterday was very long and busy. After school, we grabbed a snack and hustled over to Sarah Bush for blood work. We headed back to Charleston for Davis's painting class. Then to Pagliai's for supper and over to Mattoon to church.  Finally, home for meds and night routine. Davis didn't get in bed until 10 PM - 2 hours after his normal bed time. It was worth the running though. Davis loved every bit of Wednesday.

works in progress

Davis attended his first painting class at Tarble Art Center. He LOVED it. The instructor taught the small class about Monet, and then they used watercolors to create their own scenes. Davis went on and on about how much he enjoyed the class and he told us (Annakate and I) everything he learned about Monet.  While Davis is at class, Annakate and I have the opportunity for some one-on-one.  I guess it is a win-win. Davis gets to do something he enjoys, and Annakate and I get some girl time.

Despite the spurts of rain, Kyle has been keeping pretty busy in the fields.  If he is rained out, he has an opportunity to do other necessary tasks: dry corn, fix machinery, etc. There are very few times ever that there is simply nothing to do on a farm. We both have been running some pretty long days, and you would think that the kids being born into this lifestyle would be used to the stretches when they don't spend time with their dad, but they aren't.

Davis and Annakate continue to amuse me. Annakate says some wacky things. Yesterday, as she was telling me some dramatic story, she popped in a little slang and finished her story with, " . . . . and it was off the hook!"  After I asked her to repeat herself and had my giggle, the English teacher took over and I corrected her for her use of nonsensical slang, but it was cute.  Her hobo fear has blurred into reality.  As we were pulling into the hospital parking lot yesterday, Annakate caught a glimpse of a female walker in the distance.  She blurted out, "Hey Mom, who is that hobo?" (Why she thinks I have exhaustive knowledge about hobos beats me.) I told her that not every person who walks on the side of a road is a hobo. 

Davis has turned to writing cheesy songs.  In the same car ride, he informed Annakate and I that he wrote a bridge to his latest song, "We Can Do It Together: Great Ideas". He sang us the song - a very long song - and he even threw in some choreographed jazz hands and other arm motions. In case you haven't noticed, Davis is very geeky.  And yes, he writes lyrics and composes music for fun. Needless to say, the song was very entertaining. And the interactions like these and my children's sheer goofiness is what makes my life the best . . . perfect.  

Davis has quite a surprise on Tuesday.  Two, actually. First, he saw his former principal, Mr. Diss.  I don't know how he did it, but Mr. Diss got Davis into a Cubs hat for a picture.  My guess is that it was the first and last. The second surprise? A young lady in Davis's class wrote to the Indianapolis Colts explaining Davis's situation. They sent her a letter and a care package for Davis. She presented it to him in front of the whole class. This little girl, as all the children in his class, has such a big heart and tender spirit.  The kids in his class are amazing. It is like Davis has 24 siblings looking out for him all of the time.  They have welcomed him and his unique situation with open arms.  I am so grateful that he has such a dependable support system among his peers. 






Davis asked me last night if he was getting the PEG shots. I told him that he was.  His plan (He always has a plan.) is to convince the doctor to knock him out (sedate him). The doctor's plan is for us to give him a powerful anti-anxiety medication one hour before we arrive.  I think the doctor has the upper hand on this one. Tomorrow, Davis will meet with his Children's therapist one more time (transferring to one closer to home) and then get his chemo.  If all goes well, we should be home late afternoon.  I have faith that all will go well.

We ask that you continue to pray with us that Davis has peace about the medication and procedures, no long term or short term side effects, and a continued appetite.  Most importantly, we need your help praying for forever remission and CURE.  We are always grateful for your continued support, thoughts, and prayers as they are, with God's help, what fuel our strength to keep going.

We will keep you posted.

Dreading Friday

9/26/2011:  1:14 PM



hanging out in hospital on Friday night.
thank goodness for technology.



I was a bit surprised when Davis called to tell me that he won student council representative for his class. Yay!  His teacher and I stressed the importance of attending every early morning meeting so that his class has representation. We also thought it was a good idea that the little gal who won the second highest votes serve as a co-representative. She will stand in as the representative during the times that Davis can't be there. He's been on cloud 9 for the last couple of days. 

On Friday afternoon, I received a phone call that Davis's hemoglobin had dropped significantly. Healthy kids keep a hemoglobin over 15.  Leukemia kids need to be over 8.  Davis was at 7.3.  Davis and I headed down to St. Louis at 2:30 PM for Davis to receive a blood transfusion. The traffic was a nightmare. Not only was it 5:00 PM when we hit downtown, but there was a Cardinals game, so traffic was slower than slow. We checked into the ER and sat in an isolated area for the next several hours. We finally made it home at 2:20 AM.  The trip sure made for a long evening. 

The rest of the weekend went well. Davis felt great despite not having a ton of energy. 

On Sunday, volunteers from the Make-A-Wish Foundation came over to interview Davis and complete paperwork.  Davis has changed his mind a few times, but settled on his choices yesterday.  His first choice is to go to Hawaii and see Pearl Harbor. He just read the book, I Survived the Attack on Pearl Harbor, and Kyle is a big WWII nerd, so I think it was fresh on his brain.  The volunteer asked if he wanted to do anything else while he was there.  He replied, "Nah. Well, I would like to go to the beach and eat some unusual food."  I told him a helicopter ride might be fun, and the volunteer thought swimming with the dolphins might be neat, but he wasn't sold on either of those ideas.  His second choice was to go to Rome, Italy, and his third choice was to go to England. Make-A-Wish will actually send you abroad if your doctor approves and if there is a Make-A-Wish office near the location. Davis's wish won't be granted for awhile. He still has five to six months of intense chemo, and it usually takes 6 months to a year to fulfill a wish. Annakate is already worried because she doesn't like to fly. I calmed her fear by reminding her that Dramamine will take care of that.  I think Davis is excited. It gives him - and us - something to look forward to.



growing up way too fast . . .
trying to at least



Davis has a few new things to look forward to this week. He is going to take a painting class at Tarble Arts Center. Mrs. White, his art teacher, completed a scholarship application on his behalf and he got it.  He will also start pottery lessons on Saturday. He has wanted to do this forever. We had it lined up at the end of June, and then we had to cancel because he was in the hospital for so long. We have worked out the details and he will start on Saturday. He will attend his first student council meeting this week, and band sectionals started last week. He is playing percussion. Keeping him involved is a two-edged sword.  One one hand it keeps his mind off medicine and treatment and illness; but on the other hand, the increased activity wears him out. He doesn't have the energy that he used to, and you can really tell that although his mind wants to be there, his body doesn't cooperate.



paper? pencil? blood work?
hanging out in the
principal's office



We will head back to Children's on Friday.  Davis will receive some nasty chemo (makes it hard to walk, causes hand, foot, jaw pain) via his port, and he will receive the dreaded PEG shots (huge shots in the quad muscles). We fear that the PEG shots will be especially difficult because he has lost so much weight and muscle mass.  Today, his platelets are at 59, and the nurse said that he may need a platelet transfusion on Friday if they drop below 50. 

We are hoping for four good days of school this week.  Please pray that the kids in his classes remain healthy and strong, because Davis loves attending school.  It gives him a sense of normalcy. We ask that you continue to pray and remember in your thoughts all of the things we continue to need:  no long term or short term side effects, peace for taking medication, an appetite, continued remission and CURE.  On that note, Davis has eaten more this week than he has in the last month. I contribute that to God and to your thoughts and prayers. There isn't a real medical explanation, and we don't need one.

We will keep you posted.

Student Council Video

9/22/2011:  10:44 PM

I thought I would share Davis's video for student council.  He's too cute not to share.  I hope it works.  I am still experimenting with the video feature on this blog.

New Additions to the Family

9/22/2011:  10:28 AM

Well, harvest is in full swing.  I see the farm machinery out in full force. Kyle leaves long before anyone else is stirring in the Coffey house, and he comes home after the kids have been tucked in. The kids catch up with him through phone calls and the occasional visit to the field.  When they were younger, Davis and Annakate would beg to ride in the combine with Daddy.  They have outgrown combine riding and would rather spend their time hanging out at home.   

We have seen marked improvements this week.  Davis continues to fight taking his medication, and the fighting sucks the energy and positivity right out of me. However, he is eating more. What an answer to prayer.  It seems as though his QQ Buffet cravings are about over, and his Mexican phase has begun. He does eat a lot of chicken strips as well.  It is amazing how circumstances change you. A few months ago, I would have never allowed my children to consume as much fat and grease as Davis does now.  He needs the fat to sustain him, and the grease (french fries, chicken nuggets) isn't ideal, but at least he is eating. 

Davis has gone to school for the last three days.  Today, he actually made it on time.  Yay!  Davis spent his entire evening working on a student council poster and speech. Hours.  A typical ten-year-old, he waited until the night before it was due to do it all.  He decided that he wanted to make a commercial for his speech, and I thought this was a good idea in case he was sick and couldn't physically stand up in front of the class to present.  He even dressed up in a suit and tie for his speech.  He didn't know what to put on his poster to fill up the space, so he had me to take pictures of him to glue in the empty places. 

When I picked him up from school, he was beaming. I guess the presentation went well. There is some really stiff competition from what he tells me.  There are seven kids competing for one spot.  I know that his odds of making student council are slim, but I was thrilled that he took the initiative to try. I always worry that Davis has lost his drive to be involved since he rarely feels well and it is easier for him to say he doesn't want to do something than to push through the pain. It was nice to worry about school stuff for an evening. 

Davis has been wanting another dog, and Annakate has been dreaming of raising a rabbit.  I cringe at the thought of being responsible for one more living being, so we settled on something we could all be happy with.  Compromise, right?  Yesterday, we added to new beta fish to our Coffey family. (Thanks for the idea, Stephanie!) Annakate got her own little tank and named her little beta Carmen. Davis picked out a bigger tank and named his fish Jacker.

Carmen Coffey

On the way home from Wal-Mart, I asked the kids how they decided on the names. Annakate said she has always liked the name Carmen.  Davis said that Jacker reminded him on a movie star.  Hmm.  A famous beta? Anyway, I told Davis that the name Jacker reminded me of hijacker, and I asked them if they knew what a hijacker was. Annakate  piped up, "Oo. Oo.  I do. A hijacker is when you stand on the side of the road and put your thumb out."  Oh, how she makes me smile.  I explained to her that she was referring to a hitchhiker, and then I explained what a hijacker was.  I was so content watching them pick out their tanks, rocks, and the little plants, and I love that they (hopefully, not me) now have added responsibility.  (Annakate asks to feed her fish every thirty minutes!)

Jacker Coffey

Tomorrow, Davis will be accessed here, and I will give him his chemo at home. Since Davis only has one IV chemo this week, we do not have to go to St. Louis.  Despite the emergence of some illnesses at school (strep throat, some rashes), the kids in his class are healthy (answer to prayers), and Davis continues to go. Wouldn't it be amazing if the kids in his two classes remain healthy all year long, and Davis is able to attend school through the months of October - February? 

Next Friday is a big day. We ask that you pray for Davis now.  He will receive some nasty chemo that impedes his ability to walk and use his hands at times. He will also receive the PEG shots.  You may remember me mentioning them before. The PEGs are gigantic shots that are shot into the thigh muscle of each leg. Even though we use numbing creme for the actual stick, the chemo injected into his leg stings and bruises. He last had them on August 26, and after much debate, they agreed to give the shots to him while he was under anesthesia for his spinal tap. Next Friday, there will be no anesthesia. His legs are half the size they used to be. I am nauseous just thinking about it, and I am not the one getting them.  Poor guy.  Definitely need prayer for next Friday.

The first week of October or so, Davis will have another bone marrow biopsy to see if he is still in remission. There is not a doubt in my mind to believe otherwise.  We ask that you pray or think for the immediate and long term.  Davis needs prayer to conquer his fear of medication.  Kyle and I continue to pray for his strength and health, the kids in his classes, and short and long term side effects.  And as always, we pray for healing and CURE. 

With September being National Childhood Cancer Awareness month, I always tack on a little prayer for the other children who have to face cancer every day. Children who fight cancer are warriors like no other. They fight the disease in their bodies.They fight nausea, infections, rashes, hair loss, fevers, weight loss, weight gain, phantom pain, surgeries. They fight the stares of strangers and the same inquisitive questions over and over again. I have always thought that children (teenagers included) are some of the toughest people in the world. They would have to be to deal with the problems that young people face today. But kids with cancer . . . definitely the toughest in my book.

Thank you for your continues support and prayers.  We will keep you posted.

Another Long Weekend

9/20/2011:  1:02 PM

Let's see.  Where were we?  We got up at 4:30 AM on Friday to make all of our appointments.  Davis was super tough. He had his spinal before chemo this time. He received a bag of fluids before the spinal and after the spinal to reduce the potential for migraines. He was given his chemo, one of which is called Cytoxin. I am not a fan of putting anything into the body that has "toxin" in the name.  Needless to say, this chemo is pretty powerful and requires Davis to be on fluids for four hours. His system has to be flushed or complications in the bladder can occur. We were the first people in clinic on Friday and the last people to leave.

chemo isn't fun, but I suspect he's milking it a little here

In addition to the Cytoxin, Davis had other chemo as well.  One in particular, Ara-C, causes nausea. Davis started a new nausea medication, (He had adverse reactions to the one we have been using for the last couple of months.) and we hoped that it would work. Plus, Davis has never experienced the nausea as a side effect with the Ara-C.  Well, we made it to Collinsville when Davis became sick.  I think between the new nausea medication, the chemo, and five o-clock traffic, sickness got the better of him.  The oncologist told us to turn around and bring him back for admittance. Her concern was dehydration after the Cytoxin.  After fighting traffic back into St. Louis and hanging out in an isolation room in the ER for two hours, we were finally in a room at 9 PM on the 9th floor. There was a balloon fair going on at Forrest Park, and we were able to watch the fireworks.  That was a nice bonus for such a long and miserable day. 

the garden view

The night didn't end there. By the time Davis got his medications and we finished our normal pleading and fighting to take the medicine routine, it was midnight. I don't remember being that tired in a long time. I think I fell asleep before Davis did.

70 balloons go up during this festival

We spent most of Saturday watching the hot air balloons out our window and watching cartoons.  Hydration makes Davis feel so much better. He managed to eat some food and drink quite a bit throughout the day too.  At one point, he even felt well enough to head down to the garden to catch a better view of the happenings at the park.  That was short lived because his energy is so fleeting.

The nurse helped with medications on Saturday morning.  He did so well for her. She definitely had a no nonsense approach.  Funny how he responds to her no nonsense approach much differently than he does to my no nonsense approach. I joke about it now, but I was ready to kidnap her and bring her to Ashmore.

finally made it to school at 1:30 PM
on monday. better late than never.

We were released Saturday evening. Davis slept the entire way home. The weekend was devoted to chemo (the 4-day chemo I administer through his port at home) and rest.  His appetite is still very poor, and I wasn't at all surprised when he weighed 59 pounds on Friday. 59 pounds! The doctors are pulling out a few more tricks before a feeding tube is considered. We continue to cater to his every food wish in the hopes he will eat enough to sustain his little body. I have noticed that he has been eating a bit more the last couple of days. Not much more, but it is something. Another answer to prayer.

The medicine time continues to be a huge source of tension in the Coffey home. Davis's growing anxiety and his stubbornness make the seemingly simplest of tasks extremely difficult.  Last night, I started his medication at 6:20 PM, and he took the last of it at 9:30 PM (5 medications, most of which were 1.5 ml or under).  It is not uncommon (like last night) for Davis to become sick (polite for vomit) while taking his meds (a combination of nausea and anxiety), and then the medication has to be repeated, which leads to more anxiety. 

Today he made it to school.  Yay!  He didn't feel well, but he made it.

I can see how this journey wears on people. My heart breaks for Davis. I hate it that he has to go through this; I hate that he overthinks everything and has fears that hold him down. I admit that there are brief moments when I get into a funk and feel sorry for myself. I long for the lives we had before cancer. And just as Morrie Schwartz did in the novel, Tuesdays with Morrie, I indulge in my self-pity for a few minutes - maybe cry or throw something - and then I start counting my blessings. I think about people who survived concentration camps and their stories or the 8-month-old with brain cancer I saw in the chemo lounge or the child down the hospital hall from us on Friday who is awaiting a diagnosis. And I pray. It seems that God and the continued support we receive from all of you keep our spirits lifted enough to fight all the obstacles in front of us. 

Our most immediate prayer requests are for Davis to take ALL of his medications and EAT.  The medication will keep the cancer in remission and control the side effects, and the food will provide the nourishment he needs to keep his body running properly. We pray against all side effects, especially the long term ones (secondary cancers, liver, heart, and kidney damage, etc). We pray for healthy kids at school. We wish for Davis to go to school as long as possible, because it is the one place where he can escape the reality of cancer treatment. In order to do that, kids have to stay healthy.  Most importantly, we keep our eyes on the goal. We pray for forever remission and the CURE. 

Again, we thank you for your support, positive thoughts, and prayers.  I can't fathom our family braving this alone. 

We will keep you posted.

Holding My Breath

9/15/2011:  10:30 PM

Well, things are slowly getting better. Slowly. Right now, our lives revolve around Davis's medication schedule. It seriously takes us nearly two hours each morning and each night to get a few medications in him.  However, other than medicine time, things are pretty good. 

Davis managed to go to school for two whole days this week. When he is at school, he's great. I think school keeps his mind busy. It is his escape from the medicine, needles, doctors' appointments, etc. He can go there and be a kid just like everyone else.

Speaking of school. . . I had quite a pile of odds and ends gathering in my house to be taken to my school in Oakland. With both kids in school, I ran up there for a quick visit. Despite the visit being so brief, it was the highlight of my week. There were many new faces moving around the building, but most were familiar. It was nice to see some of the staff (I didn't get to see everyone). I even bumped into some of my students during lunch and passing periods. Quick hugs and Homecoming talk made me want to stay forever. Well, maybe not forever, but at least until the end of the day. Pulling out of the parking lot was bitter sweet. I was so happy (I wish there was a better word) to be able to see my friends and my students, but I was terribly sad to leave. Actually, it seemed weird to be leaving school in the middle of a school day.

Ok. Back to Davis. . . Davis's eating is still sporatic at best. He rarely eats breakfast, but it seems his appetite increases as the day wears on. Tonight, he ate better than he has in weeks. We ate at QQ Buffet (he loves the rice), and then he managed to eat some popcorn before bed. Not really the high fat, high protein diet he is supposed to be on, but I guess it's a start.

While I was picking up Annakate's medicine (antibiotic for a just-in-case cold) at Walgreen's, I went ahead and got my flu shot. Annakate thinks I am super brave, and Davis couldn't watch.  He sat in a chair facing the wall.  Actually, I was adjusting my position in the chair and talking to Annakate, and the gal just stuck me. Yikes!  I usually have to mentally prepare myself. You know, . . . relax the arm, count to three.  Well, not this time. My muscle was flexed, and boy, I can feel the tenderness every time I move my arm.  And when I really feel the soreness, I say a little prayer for Davis.  My flu shot arm woes are nothing compared to what he has to endure.

Davis has been blessed by so many. He still continues to receive cards from people everywhere. We enjoy his "fan mail" as much as he does. Tonight, cousin Christina Coffey dropped off an impressive painting done by one of her friends, Jon Schubert.  He placed a scripture at the bottom of the painting of Darth Vader, "The word of God is living and active, sharper than any two-edged sword (or light saber)" Hebrews 4:12. We got a big kick out of that. Christina had it framed, and I already have the perfect spot to hang it in his room.

We will leave early in the morning to make an 8:30 AM appointment.  Davis's counts are great this week.  The week off worked in terms of building his blood counts.  His white blood cells are over 3 (healthy kids are over 5). His hemoglobin was 10 (healthy kids over 15), and his ANC was up to 2500 from 230 last week (healthy kids are over 1500). His platelets were great too.  So his chemo treatment is on for tomorrow.  He will repeat the four day chemo that he did a few weeks ago. He will also have another LP (lumbar puncture or spinal tap) placing chemo into his central nervous system. He will receive fluids before and after his LP since he is prone to migraines. And we will finish up the day with an appointment with the psychologist.  We are still working on taking medication.  Go figure. I remind myself that every chemo treatment, every trip to St. Louis, every spinal is inching us closer to being past this phase - this ordeal - and to being closer to our normal lives we miss so dearly.

The most immediate prayer request we have is asking for Davis to have peace when it comes to taking his medication. It is a necessity that he overcomes this fear of swallowing pills. We also ask that you continue to pray for no long or short term side effects, and for healing and CURE. Thank you in advance for all of the concern, positive thoughts, and prayers that you send out to us. I can't think of a family who has been more touched and blessed by others than we have. We continue to feel so undeserving. 

I will let you know how tomorrow goes.  We will keep you posted.

Didn't See This Coming

9/13/2011:  2:00 PM

Talk about knocking the wind out of our sails.  This was supposed to be an easy week for Davis. A count building week. 

Davis slept away most of the weekend.  We didn't mind. We figured it was the radiation, and besides, we wanted him good and rested for school this week. 

When he awoke on Monday, he snapped. He decided he was taking a day off. He refused all medications and food. When I would nag him enough to take a medication, he would willfully force it up in protest. He wouldn't do any homework. He was determined to quit school, piano, GE . . . . everything. No one could talk sense to him. He was thoroughly annoyed with us, and he said many hateful and hurtful things. I spent the day arguing with him. No TV, computer, Ipad, phone. When I reached my breaking point, I called the doctor. It broke my heart to admit that I needed help and that I didn't even recognize the terror he had morphed in to. I think for those of you who know Davis, you would agree that this type of behavior is far from normal for him. He is sweet, compassionate, and full of creativity.  He is a genuine nerd; he loves learning. This new behavior was so disheartening.

The oncologist and psychologist both agree that Davis's anxiety is getting the better of him. He is afraid to take his medicine. He is afraid to go to school in case he gets sick or tired. He is afraid to eat because it hurts his stomach. He worries all of time. In an effort to help him, he has been prescribed a little something. Hopefully, we will see marked improvement over the next few weeks. I tell you, it seems he is his own worst enemy.

I have started giving him Muscle Milk and Pediasure to drink. He has grown so thin and weak from not eating. I am hoping that this will help. He hates the taste of them.  I have figured out that if I heat up the chocolate Pediasure, I can pass it off as hot chocolate. I tried to thin down the Muscle Milk with actual milk, but he still refused it.

Monday was horrible. Today started out incredibly rough. We can't seem to have a peaceful morning when there is medication involved. Davis did go to school for nearly an hour before needing to come home. Hopefully, each day will get better. He needs a better routine than this. We all do.

Please continue to pray for peace for Davis. The oncology nurse is encouraged by the amount of fight he has in him, but sadly, he is fighting the wrong things and people. He needs to fight the cancer and his negative attitude, not the medications, doctors, and us. Pray for his health. He has to start eating. He is not going to feel better if he doesn't have the nutrients to sustain his little body. We still need to pray for all of the other things as well: side effects, healing, and CURE.  And please pray for our family. It hasn't been easy trying to create a normal life around this sickness, and we all miss the lives we had before cancer.

We could not make this journey without your support and prayers.  Thank you for standing by our sides.

We will keep you posted.

A Week Off

9/11/2011:  9:53 PM



I have been reunited with my computer.  I picked up the parts today, and it is back in service. Let's see. Where did I leave off?

monitors for watching
Davis during
radiation

Well, Davis met with his psychologist. She is helping him with some of his anxiety.  We have mini-homework and homework-homework. For mini-homework, Davis has to practice swallowing sprinkles with large gulps of water. This is the first step to swallowing pills.  He doesn't want to practice because he can feel the sprinkle in his throat. His homework-homework consists of taking all of his medication in fifteen minutes, and we are to provide a distraction. Before this new goal, medication routines were taking more than an hour most days.  It was sucking the patience right out of us. Davis has been doing pretty well so far.  Definitely not easy changes though.



love those awesome
radiation techs



Davis is finished with radiation. Wahoo!  In the last two weeks, we have clocked over fifty hours in the car. I think I could drive that St. Louis run in my sleep now. Thursday was his last day for radiation, and he nearly didn't complete it. On the way down, Davis developed some severe allergies that caused him to sneeze over and over again. He also had a runny nose. All of the symptoms combined left him pretty miserable, and he didn't want any part of putting a mask on his face. The technician talked him into it, and all of the techs worked quickly to make the time spent in the mask as short as possible. They even made him a sign!  He made it!  Whew!  Afterwards, he rang the bell.  He was grinning from ear to ear.



joyous bell ringing

On Thursday, we also received word that Davis's counts weren't high enough to start the next 29 days of chemo. His platelets have to be over 75, and his ANC has to be over 750.  His ANC was 236. Although we do not want to have to stop treatment, the week off is a nice break for all of us.  He was hoping all week for a delay because of one his best buds was having him over, and he didn't want to have to be accessed (getting ready to start four-day chemo).  Sadly, he wasn't feeling well enough to go anyway.

I took Annakate to the doctor on Friday. She has been struggling with some allergies, sore throat, and a wet cough. We wanted to make sure she didn't have strep. With Davis having such a compromised immune system, we don't hesitate to take Annakate to the doctor as soon as she develops symptoms. All is well. Annakate is suffering from allergies and drainage.  Nothing serious. 

lots of sleeping

We are starting to see some side effects of the radiation. Davis sleeps a ton. Yesterday, Davis was only awake for six or seven hours. We have hung blankets from his loft bed to darken below where he sleeps on his futon.  It creates a cozy little tent-like space. And today, he slept all through church.

Davis has started to eat a bit more. He isn't drawn to the things he is supposed to be eating (high fat and high protein), so we have to encourage him quite a bit. He continues to look terribly thin. He weighs 63 pounds. Annakate, 56 pounds, may outweigh him soon. I know that this will pass, but seeing him look so frail really bothers me.

What else?  Hmmm.  We completed some of the paperwork for the Make-A-Wish Foundation. Every child with a life-threatening condition is allowed to make a wish.  Davis can't think of a thing.  He did come up with a few ideas: travel to Maine, Washington state, or Alaska, own a husky dog (we already have a dog), or meet Hayden Christianson (Annakin Skywalker).  I was holding out for Hawaii or at least some place warm with a beach, but it's not my wish. Our liaisons will be stopping by for a house visit sometime this month to meet us.  I will let you know what he decides.  

With the press and the tenth anniversary, the September 11th attacks have weighed heavily on my mind lately. I remember ten years ago so clearly. I was sleeping on the couch after a rough night with a two-month-and-one-day year old. Davis had finally fallen asleep on my chest, and I had no plans of moving for fear of waking him. I freed my left hand to grab the ringing phone sitting on the floor beneath me.  Kyle called to tell me to flip on the news. I dropped the phone in my hand and grabbed the remote which had been sitting on the floor next to the phone. The news feed and pictures on the TV were surreal. I remember at one point watching grown men jumping out of their skyscraper office windows to their deaths as my baby's head rose and fell with each breath I took. To this day, I still remember my exact thoughts. How blessed am I to be holding my baby when another mother's baby is jumping out a window. I could have never guessed that ten years from then that cancer would remind me how blessed I am to still be holding my baby. 



sleeping through the service with Kyle's
bible as his pillow



We are so thankful for the continued support and prayers.  We never lose sight of knowing why Davis has done so well.  We are looking forward to the week off. We will head to St. Louis on Friday for chemo and a spinal if Davis's ANC is over 750.  If not, he will get another week off.  Here's hoping for a great, healthy week. 

We will keep you posted.

Mess Ups and Road to Recovery

9/5/2011:  11:00 AM

My computer is having issues.  The battery has been practically shot for awhile, so I have been relying on the power cord.  Well, the power cord no longer works.  I ordered new, and it will be a few days until the parts are in. I have been stalling in an effort to avoid using Kyle's computer, because the keyboard is way too flat and my fingers are way too fat to hit these tiny keys, but here goes. Apologies for the typos in advance.

Sunday through Wednesday were rough. Hands down, the worst we have had since we left Children's weeks ago.  But then the sun arose on Thursday as did Davis.  He even begged to go to school.  We arrived late, but still made it. He felt sick all the way there.  At one point, he yelled from the back seat, "Mom, floor it!" In a panic, I glanced in my rear view mirror, "Are you gonna puke?"  His eyes were closed and he was cupping his hand around his forehead. He said, "No, but I am going to miss the read-aloud."  That brought a smile to my face. And yes, he missed the read-aloud.

radiation machine

He managed to enjoy a couple of hours of school before we had to head down to St. Louis for radiation.  The actual time his brain is radiated is three minutes, and the whole process (getting positioned, placing the mask, etc) takes about ten. I was able to watch him the entire time on TV monitors. Pretty uneventful. Davis describes radiation as three bright flashes and a swoosh of metallic smelling air that shoots up his nose.  The techs say that it what most people experience. 



only 8 bites of this beautiful salad



Thursday night, Davis enjoyed eight bites of a bland salad. We met the director of the food service at the hotel that we stay at in St. Louis. His twin brother was diagnosed with AML (the other type of Leukemia) thirteen years ago, and he was the bone marrow donor for him.  We enjoyed some nice dinner conversation with him.  Later on that evening, Davis and I played in the pool for awhile, as we had it all to ourselves. I was worn out and slept well.

On Friday, I had a series of mess ups. Kyle and I make a pretty good team.  There are certain things that he usually takes care of, but when he is not there, I am in charge. Davis woke up on Friday with nausea. In an effort to keep the Neurontin, a side effect med, down, I gave him three baby goldfish. We then went about our day. He had chemo, and then we headed down to the APC (Ambulatory Procedure Center) for Davis's spinal tap. Because of those three little baby goldfish, we had to postpone the spinal tap until 3:00 PM, which meant Davis had to go even longer with no food and drink.  A recipe for disaster.  Needless to say, we had a ton of time to kill. 



looks uncomfortable to me

Davis developed a headache (probably from not eating) around 11:20 AM and slept in a wheelchair for a good hour. He was already a grouch, so the sleep was a blessing. His radiation was rescheduled from 4:45 PM to 1:00 PM.  As we waited to get into radiation, a putrid garlic smell began to permeate the waiting room.  Davis suffers from extreme sensitivity to smells; certain and most smells make him instantly sick.  We had to wait in the hallway by the elevators, and Davis grew even more agitated. Finally, he was worked in for radiation. 

he's under there somewhere

We headed back to the APC for the spinal tap. They whisked him back right away, and he was awake much earlier than anticipated. He was awake ten minutes after the procedure. He had to lie flat for one hour and receive a bolus of fluids. As the hour progressed so did Davis's nausea, and as his health worsened, so did his attitude. He was intolerable. He refused to eat or drink and begged to stay at the hospital. The oncologist came down from 9th floor to check him out as well. It was very much the consensus that Davis is suffering from some anxiety. In order to get him out of the APC, it was recommended that I give him some of his oxycodone. (You have to bring ALL of the meds with you every time.) This is where my next mess up came into play. I had left the medicine - all of the medicine - in the car. It was all ruined. Apparently, as I have learned, medicine can't withstand temperatures greater than 75 degrees.  And if you remember, it was 100 degrees on Friday. I had to wait on a refill for oxycodone at the hospital because pharmacies can't fill pediatric prescriptions for narcotics. We were finally on the road around 6:00 PM - 4 1/2 hours behind schedule.

Davis improves a bit every day. He is still plagued with mild headaches and nausea, but no fevers. The doctors are still puzzled as to the cause of last weeks symptoms and introduced yet another new possible idea.  Hypoglycemia (low blood sugar). Between the chemotherapy drugs and Davis's non-existent appetite, his blood sugar is low, especially in the morning. He tells the doctors that he has a bad headache in the morning, and then he eats a Casey's Gas Station donut before school, and he feels much better. We all would laugh it off, and tell him that if he thinks donuts are good medicine, he can keep eating them. But Dr. Bednarski concluded on Friday that if Davis's blood sugar is low, he would have morning headaches, and donuts (food high in sugar) would relieve them. So now, we are watching for symptoms of hypoglycemia in addition to other side effects.

The radiation has claimed even more of his hair, but I am still amazed that he is not bald yet.  He still refuses to shave his head. He is stubborn and is content with loosing it one piece at a time. His radiation will end on Thursday, and on Friday, he begins a new 29 day round of chemo if his numbers (platelets and ANC) are high enough.

We continue to receive such fantastic encouragement and support from so many people. It is such a comfort to know that we have not been forgotten.  We can't thank you enough. We are touched that Davis's fight has been far reaching. Davis has a gentleman, whom he has never met, who lives in Arizona and travels about. Mr. Spear sends him postcards of places he visits. Davis loves geography and has enjoyed the postcards. Davis continues to read the cards the come his way too - his fan mail. :) 

We know how blessed we are. We are pretty fortunate that Davis experienced his first illness seven weeks into treatment.  Many children are sick from the first day of treatment.  It was also a blessing to know that Davis's immune system responded quickly and well to whatever it was that Davis had. The oncologist reassured me that this won't happen every time, but it was encouraging to know that at least at that point, Davis had a healthy immune system.  We pray for Davis's health and the health of those he is around all of the time. We know that this week could have been far worse looking back on it. Experiencing it . . .living it, it was sure horrible, though.

 Davis no longer eats, so we pray that his appetite kicks in. He has already lost three pounds and is twenty or more pounds lighter than many of the fifth graders he goes to school with. He will eat a couple of bites of something and be done, and he is very particular with what he eats. Lately, all he has craved is lettuce. The nurses and others encourage us to give him protein and fat rich items: peanut butter, steak, eggs, yogurt . . . all things he wouldn't touch before cancer, and all things he won't even think about now. I take that back; he will eat the white part of a boiled egg. That's it.

That is one of the hardest parts of this journey. Davis is ten. He isn't ruled by reason; he is ruled by emotion. We, as adults, know the importance of eating even when we don't feel like it, but ten-year-olds don't eat if they are not hungry. We, as adults, can comprehend the long term importance of taking medications at scheduled times, but ten-year-olds who don't feel well are ok with taking a day off from medication.  And so the battle continues. I guess that the flip side is that Davis is ten. He is allowed to have his opinion, but at the end of the day, we get our way, so he continues to chug down the medications and nibble bites here and there.

We continue to pray for no sickness, no short or long term side effects, healthy kids and teachers at school, and peace. We continue to pray for Annakate's health and well-being as well as the children in her classroom.  Most importantly, we continue to fervently pray for continued remission and CURE.  We give God the praise because that is where it is due. We want to be the one leper of the ten that came back to thank Jesus for the healing as found in Luke 17, because it is our faith that brings the healing.

¹² Then as He entered a certain village, there met Him ten men who were lepers, who stood afar off. ¹³ And they lifted up their voices and said, “Jesus, Master, have mercy on us!”
¹⁴ So when He saw them, He said to them, “Go, show yourselves to the priests.” And so it was that as they went, they were cleansed.
¹⁵ And one of them, when he saw that he was healed, returned, and with a loud voice glorified God, ¹⁶ and fell down on his face at His feet, giving Him thanks. And he was a Samaritan.
¹⁷ So Jesus answered and said, “Were there not ten cleansed? But where are the nine? ¹⁸ Were there not any found who returned to give glory to God except this foreigner?” ¹⁹ And He said to him, “Arise, go your way. Your faith has made you well.”

Thank you again for the positive thoughts, prayers, care and concern you keep sending our way. We love and appreciate them.  We couldn't do this without your support.

And as always, we will keep you posted.