Short-Lived Trip Home

10/13/2011: 9:59 AM

At around 7:45 PM last night, Davis spiked a fever of 101.3.  He convinced me that it was because he had taken a shower, so I repeated the reading 15 minutes later. 101.7.  Since he is neutropenic (low counts, ANC below 500) and has fever, St. Louis had to be notified immediately.  We were advised to go to the local ER and wait for transfer.

I think we arrived to the hospital at about 8:30 PM. Sarah Bush was so kind to us. Our nurse and ER doctor were fantastic. Davis' port was accessed and blood was drawn for cultures.  He was given a bolus of fluids. They later did a peripheral draw from his arm to test against his port draw.  The idea is that if his port blood draw is positive for infection and his arm draw is negative, it will point the doctors to a compromised port or port infection. After the draw, an IV antibiotic was started. 

The ICU transport team from Children's arrived a bit after midnight. After some paperwork and a quick examination, we were loaded into a hulk of an ambulance and driven to St. Louis.  For safety reasons, I was not allowed to ride in the back with Davis, but there was an opening between the cab and the back that allowed me to see what was going on. The ride was pretty uneventful. Davis slept the entire way. He didn't wake up for any of the experience.

We arrived on the 9th floor a little after 3 AM.  There was a steady stream of visitors -vitals techs, nurses, doctors- when we arrived. Another blood draw was done to test his blood for a fungal infection. A bit after 4 AM, it was lights out. They repeated the IV antibiotics this morning, and Davis was given another bag of nutrients with potassium because his potassium count had dropped. No word on the need for blood or platelet transfusions yet.

A quick briefing this morning let us know that Davis will stay here in the hospital until his fever has been gone for 24 hours and until his counts start to recover. The doctors are hoping to have more information as some of the cultures start revealing information. They will be making rounds soon.

Davis is sleeping peacefully. He has only been awake for about 8 hours of the last 24. Yesterday, he ate a cheese stick and two baked Lays potato chips. That's it.

We appreciate your prayers. We are praying that whatever this is, it is minor and Davis will be well soon. We thank you in advance for doing the same.

I will keep you posted.

And Then There Were Lows

10/12/2011: 6:44 PM

The last couple of days have been a blur.  Davis developed a migraine on Monday that intensified on Tuesday. He was experiencing nausea and dizziness.  He explained the feeling as non-stop car sickness.  He didn't have much of a fever, and his chemo on Friday wasn't difficult or sickening by any means, so I called the doctor.  The doctors (a couple doctors/nurses discuss it and make a decision) decided that Davis needed to be admitted for pain control and observation.

Davis and I left Tuesday evening and arrived in St. Louis around 7 P.M. We have to enter through the ER because the hospital is closed after regular business hours. We were given an isolation room (a courtesy and necessity for immuno-suppressed children). 

There was a bit of trouble when Davis' port was accessed. The nurse was unable to get a blood return (drawing blood back into the IV tube to make sure that blood can be pulled out and medication can go into the vein). Another nurse tried unsuccessfully. There was some brief talk about a defective port and/or a clotted port. The IV therapy team was called in. After a long wait and a brief visit from the IV therapy team, Davis' port access was stabilized and working.  The nurse pulled blood for cultures and CBC and a bag of fluids was started.

Hours passed.  Davis and I watched TV to numb our minds and drown out the cries and screams of babies and children in other rooms down the hall.  Not much on in the wee morning hours.  Did you know that giant jellyfish are destroying the fish market and swarming the beaches of Japan?  Did you know that sharks are pulled onto boats and their fins are hacked off, and then they are thrown back into the ocean to drown?  Yep. That's what we learned. Disgusting, huh.

We received some partial results a little after midnight, but his electrolytes had clotted so more blood had to be drawn for another test.  Davis was agitated and adamant that he was not going to 9th floor, and after hours of crying, it was decided it was best that he stay in the ER until a definitive decision was needing to be made.

Test results revealed that Davis was dehydrated - nutrient depleted. This is most assuredly a result of his refusal to eat and drink enough to sustain normal function. He had lost a pound as well. 58 pounds now. His counts were low. His white blood cell count was .2 (healthy kids between 5-10), and  his ANC (absolute neutraphil count - the immune system. Healthy kids are over 1500) was 0. Zero! We are so fortunate. Many cancer kids experience this, but this is our first zero ANC and we are three months into treatment.  Because of his low ANC and his lack of good health, Davis is homebound until he feels better and his counts improve. He also had a low calcium reading, so we are going to supplement his diet (if that is what you call it) with Tums or calcium chews.

We were finally released from the ER at 3:00 AM. We headed to a hotel. Sleep was well overdue. We made it home around 4 PM this evening. Davis slept most of the way home. It was one of the few times that I actually enjoyed the drive. The rain was peacefully drizzling down and the colors on the trees seemed abnormally vibrant. So calm, so serene.

His chemo scheduled for Thursday and Friday has been postponed a week. He doesn't have the counts to support chemo as of now.  He will go to Sarah Bush tomorrow to have another CBC draw. This will see if his counts have improved. That is the goal. If his hemoglobin or platelets have dropped, we will make another trip down to St. Louis tomorrow for transfusions. If he still has this migraine and isn't eating or drinking, we will be heading back as well.

There's no place like home. We were gone for about 24 hours, but it has felt like days. Annakate greeted us with whining. It didn't take me long to see her runny nose. I grabbed the thermometer. Yep. a low-grade fever. She's sick. It looks like a cold or something along that line. Davis and Annakate have been quarantined to separate sections of the house, and I am dividing my time and attention between the two. With Davis' immune system being non-existent, it is vital that they stay away from one another.

My poor babies. You don't think about health much until you are not healthy.  I pray that my children feel better soon.  It is of utmost importance that Davis starts eating and drinking. We continue to pray against all of the side effects and for complete healing, but getting him to a healthier state and getting him back to school is our goal this week. Davis does so much better when he has routine in his life.

Thanks for your support.  We appreciate all of the cards, texts, calls, and emails that you are sending our way.  Very thoughtful.  You never cease to touch our hearts with your kindness. 

We will keep you posted.

Fewer Blogs = Good Days

10/10/2011: 3:30 PM

I apologize for doing a poor job at keeping up with the blog. When Davis is well and his ANC is high enough, we sqeak in as many normal activities as possible. We have been busy lately. 

a young monet, perhaps?

Recap of last week . . . Davis had a great week.  He was able to get up early on Wednesday to attend his first student student council meeting.  The group is getting ready to fundraise for polio. He decorated his "Pennies for Polio" can a few days ago.  He sure has been completing a lot of projects as of late. After school, we ran to Sarah Bush for bloodwork before rushing back to Charleston for his painting class.  He finished his Monet-style watercolor painting.  He began feeling ill shortly after eating supper, so we ended our evening there. I had a hunch that his blood might be a bit off since his energy and appetite dropped off drastically.

field trip fun

Thursday finally arrived. We had to get up super early to go to school because Davis and his class had a field trip to the Challenger Space Center in Bloomington. While the teachers awaited for all of the students to arrive, I armed myself with a bucket of Lysol and bleach water and wiped down all of the seats of the bus. I worked up a sweat at 6:20 in the morning. I rode with a few other mothers as we followed the bus up. The field trip was amazing. I had just as much fun as the kids did. Davis actually thinks he went into outerspace. If you are not familiar with the Challenger Space Center, the kids are given jobs similar to what Mission Control and astronauts would have. Then, they go into this simulated space shuttle to try to complete a mission. They have to read gauges, report humidity, put together a probe, communicate with mission control, measure items using robotics, etc. It was very hands-on. The afternoon consisted of hands-on lessons in physics - a concept hard for 5th graders to understand. The kids were so well-behaved and everyone seemed to really enjoy themselves. 

Friday was supposed to be a quick trip to St. Louis. Our appointment was at 10 A.M. The only chemo Davis was to receive was a push through his port (basically a shot in an IV) and a 45-minute platelet transfusion.  Normal platelet levels are between 150-400. On Friday, Davis was at 8. Yikes! Unfortunately, Davis can only have a certain type of platelets because of his blood type and the hospital was out of matching platelets. They had to be ordered from the Red Cross, and the Red Cross truck didn't arrive with the platelets until 2:00 PM. No real complaints though. We just hung out in the chemo lounge. Davis played on the computer and I did a lot of nothing. We were finally on our way home a little after 3 P.M.  So much for a short day. 

I can't believe I did that to him

We pulled into the driveway on Friday evening around 6 P.M. Davis and Annakate were flitting about the car. I was barking orders to help carrying in the collection of stuff that had made it from the house to the car over the course of the last couple of days. I loaded myself down with backpacks, a computer bag, my purse, a blanket and pillow, and used my hip to shut the door to the car. Before I knew it, I was flat on the pavement. Davis, who was experiencing some car sickness, had stepped out of the car and kneeled down in the driveway to allow his dizziness to pass. Obviously, I didn't see him and tripped right over him. Figures. Just when the doctor warns us about his low platelets and no bumps, scrapes, or hits. . . Davis was fine. I did call the doctor because within seconds - not minutes - seconds, the bruises started to appear.  Poor guy. His legs look horrible, but thankfully, they don't hurt. He gets a kick out of showing people his bruises.  He says, "Hey, look what my mom did to me." 

a turtle and a pig

Davis's appetite increase was short lived and he has fallen back into his pattern of not eating or drinking very much. He was back down to 59 lbs. from 61 lbs. the previous week.  Kyle has challenged him to weighing 70 pounds by Christmas, but that seems a bit out of reach at this point. 

Davis enjoyed pottery on Saturday.  He ran out of time to glaze his turtle because he is in the process of making a piggy bank.  Definitely a work in progress.  

We found out on Friday that Davis is to avoid pumpkin patches, straw, hay, and farming in general. There are many molds that grow on those things and on dead leaves and such around this time of year, and those molds and fungi are what cause serious lung infections in children with suppressed immune systems.  Davis complained quite a bit when he found out that he couldn't go to the pumpkin patches he has gone to his entire life, but so be it. There will be next year. 

pennies for polio project

Davis starts the next phase in the consolidation phase this week. It is shorter (41 days) but appears to be harder. He will have chemo on Thursday and Friday of this week. He will receive methotrexate (a chemo Davis doesn't particularly do well with) through his port and via spinal in addition to other chemo on Thursday. On Friday, he will receive another set of Peg shots.  If his counts (ANC and platelets) aren't high enough for treatment, chemo will be postponed for a week.

We will keep you posted.

A Few More Firsts

10/3/2011:  12:11 PM

davis entertained us by

clipping on annakate's

fake hair and singing his
version of willow's,
"whip my hair".

Unbeknownst to me, a friend of mine at work organized a get-together with many of my work friends. I thought I was meeting two for supper. There ended up being eight of us.  It was incredible to sit with my friends and talk about things outside of cancer. It brought me such peace to know that school life is clicking along without me, but it hasn't changed too much.  I think that one of my fears is that so much will change at school (my work) that I will be starting all over again next year. I feel like sometimes I am losing my point of reference. Anyway, it was a perfect evening at Pagliai's. We plan on doing it again. Thanks go out to my friend, Lisa Taylor, for organizing and not taking no for an answer and to the gals who came.  It meant a great deal to me. 

platelet
transfusion

Friday came and went. Thank goodness.  Davis met with his psychologist, and they worked on breathing techniques.  Davis hung out in the clinic for the rest of the day.  He received his first platelet transfusion. Platelets look like Tang!  I guess we just thought since they were in blood, they were red.  Not the case. After he received his platelets, he received his Peg shots and Vincristine.  He did an amazing job.  He cried during the shots, but I am pretty sure that the toughest grown man would have cried too.  He said the shots hurt more than usual, and the nurse told him that the dose had increased.  Because of weight and muscle loss, his legs are smaller as well.  After the chemo, he received a blood (hemoglobin) transfusion, and we were on our way home by late afternoon.

Kyle came up with this idea to have a present on hand to reward Davis for his hard day. I wrapped up a couple of things he had asked for, and we took it with us to St. Louis.  He was so amazingly brave and was tickled to open up his gift. It was nothing too exciting, but the Webkins beaver, now named Pegs, and the bakugon were nice distractions for the day. I assumed that we were done with the Pegs for awhile, but that is not the case. Starting in two weeks, Davis will receive increased doses of Pegs shots every ten days or so for 41 days.  Looks like I will have to start shopping for more rewards. 

junk food galore. oh, and pegs,
the beaver

Davis's appetite has greatly improved.  He actually gained two pounds! He now weighs 61 pounds, a far cry from where a healthy ten-year-old should be. He is drawn to junk food. And although the junk meets his high calorie diet and the sweets help with his bouts of hypoglycemia, I don't want him to develop poor eating habits. Davis and I agreed to better eating starting today.  We will see how that goes.

Davis went to his first pottery class.  He LOVED it. His teacher is extremely nice and knowledgeable and identifies with kids very well.  Davis's first lesson was to make a turtle.  His homework is to create a dog. He plans on working on that tonight.  I am kicking myself for not taking a picture of the turtle.  I will be sure to get one after it is fired and glazed.  Davis is very much into animals, so starting out with animal sculpting makes sense. When Davis becomes more experienced, he will move to a wheel.  I jokingly told him that I better get a mug or a bowl for Christmas. 

I am so grateful that so many people are willing to go the extra mile or be inconvenienced by Davis's special needs. It is terribly difficult for a child who has cancer to feel "normal". With the help of these teachers, students in his class, his friends and their parents among others, Davis leads a very "normal" life.

This weekend was pretty fantastic overall. The kids managed to play a great deal of Wii, and we had a movie night/slumber party as is our family tradition. Davis experienced virtually no side effects until Sunday evening. Davis has developed mouth sores (side effect of the chemo). Basically, they are canker sores on the sides of his mouth and on his tongue. Many people get them while on chemo. Davis has been so blessed to have not had them up to this point, and I pray that we are able to keep them under control or that they go away so the mouth pain doesn't affect his appetite.

Davis has a big day on Thursday. His class will be going to Bloomington to the Challenger Space Center. He received the OK from the oncologist on Friday, and he even gets to ride the bus! I know that doesn't sound exciting to most, but Davis has been banned from bus riding because of the amount of germs on one. I find humor in that most kids could care less about riding a bus, and Davis would feel accomplished if he just hopped on a bus for a spin. Perspective, I guess. I am going to remember this experience, and the next time I hear one of my students complain about riding a bus, I will tell them that they should be thrilled to ride the bus. :)  Not sure if it will work. Anyway, I do have to clean the area where Davis will be sitting, and I might as well wipe down the whole bus in an effort to keep all of the kids healthy, but that is no big deal. I can clean and sterilize things in my sleep. The field trip should be a blast. The kids have done a great deal of learning to prepare themselves for this day. Can't wait.

 

Kyle is harvesting acre by acre (as if there was another way). On Friday evening as we were pulling into town on our way home from St. Louis, I noticed a parked combine and three men - three very familiar men - staring into the head. It is never a good sign to see men staring at a parked combine. Needless to say, Kyle picked up an old guy-wire in his bean head. No real worries. It was fixed a day later. Accidents like this happen all of the time; you just don't want them to.

Music has always been a refuge to me. I thought I would share some of the songs that comfort me on this journey. The first one is about breast cancer (October is breast cancer awareness month), but the chorus is so true about all those who love someone who has cancer.  I have attached the video if you are interested in checking it out.

Another song I adore is by a band called Rascal Flatts. The very first time I heard this song was when one of  my students handed me her Ipod and insisted that I listened to it. Even though I immediately loved it then, the lyrics mean so much more to me now. Click on the link to view:

http://www.cmt.com/videos/rascal-flatts/599179/i-wont-let-go-cmt-invitation-onl.jhtml?artist=710215



love this picture. love these guys more.



We continue to get along surprisingly well.  We know that Davis is doing so well because of God's goodness and your continued support and prayers. We couldn't have asked for better family, friends, or communities. We pray for Davis to overcome these mouth sores. He has greatly improved in taking his medications without a fight, but some days prove to be harder than others. We are so thankful that he has energy and appetite, and we pray that those continue.  We also pray for the health of his classmates. Wouldn't it be quite a testimony if the children in Mrs. Meyer's and Miss. Goodchild's classes escape major sicknesses all year? Well, I am believing for it. We continue to pray against long term and short term side effects as well as healing and CURE.    

Looking forward to a great week. I will be sure to take pictures at the Challenger Space Center.

We will keep you posted.

P.S. Miss. Franklin, please send me your email address to abcoffey77@gmail.com, and I will be in touch.  Thanks!!











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.