Their Best Guess

8/31/2011:  3:18 PM

Davis's class just skyped us here at home. I just wish he was here to see them.  Skype is going to work well for those times that Davis is unable to attend school but still well enough to participate in the learning process.  Thanks to Mrs. Meyer, Mrs. Poffinbarger, and Jefferson for making Skype an option for Davis.

Back to the update. This is what Kyle has relayed to me throughout the day. . .

Davis is on his way home. Yay!  He ate six animal crackers and drank a few ounces of Gatorade. The biggest concern, his fever, is now gone. He still has a headache and nausea, and they are hoping to keep that under control with Tylenol, despite it being a fever masker. Davis will have more blood work done at Sarah Bush before we head back down to St. Louis for radiation. This will determine if he will need a transfusion before his next spinal tap on Friday. While his counts are still good, his hemoglobin and platelets have slipped a bit. His ANC (immune system) still continues to climb; today it was over 3700!  The doctors do not seem to be alarmed at the rapid increase; however, they do agree that it is unusual for a cancer patient with a suppressed immune system to have an ANC so high. They assured us that it is a good thing, not bad. While they can't seem to explain it, we can. God. Answers to prayer. Yep. I think that sums it up.

The theories. It could be very possible that Davis has caught a little virus. Most of his symptoms are symptoms that can be linked to a flu.  However, there is a real possibility that his symptoms were caused by a spinal leak. Since Davis receives chemotherapy via spinal each week, it is possible that some of the chemo leaked out of the spine through the hole made by the puncture. This would cause these symptoms too. The doctors are hoping to watch Davis, his numbers, etc tomorrow to see if his symptoms subside (flu) or persist (spinal leak). On Friday during his next spinal tap, they will take some of his own blood from his port and inject it into his spinal fluid. His blood will "go to work" as Kyle puts it, and patch the holes in his spinal column. I find that pretty fascinating - the whole idea of using the body to heal itself. If it is a spinal leak, this will hopefully take care of the problem. 

They also plan on giving Davis fluids before and after the spinal tap.  The chemo may be creating some wear and tear on the body and the effects could be heightened if he isn't well hydrated. And since he isn't eating or drinking willfully, fluids are a good idea. 

We had to reschedule his appointment with the psychologist. He will meet with her next week.  She plans on helping Davis with his brain block on swallowing pills.  Good luck, Dr. Nesin. :)

Saying that I can't wait until he is home is massively understated. I can't wait to squeeze him.  Thank you, thank you, thank you for all of you who sent prayers up on his behalf. They were heard, and we are so much closer to having Davis feel himself again. Please keep them coming. 

We will keep you posted.

Update . . . Well, Kinda

8/30/2011:  9:41 PM

My poor baby.

Kyle took Davis to St. Louis today while I caught up on missing sleep from the last couple of nights and while I stay with Annakate to keep her in a routine and to rescue her from her homesickness.

Davis was admitted to Children's today. He is still running a fever and suffering from severe headaches and nausea. The doctors drew more blood for a CBC and culture. The culture from two days ago when he was in Sarah Bush didn't find any infection. His CBC today revealed an ANC over 3300 (Reminder: healthy kids are over 1500.). That means that his ANC has doubled every day since Sunday. The doctors told Kyle that this is an indicator that he may be fighting off an infection. From what I understand, Davis was given caffeine through his port to knock out his headache. If his headache was a headache caused by his spinal taps as suspected, the caffeine would take care of it. Well, he still has a headache. He was also given a bolus (a gob of antibiotics given through the port) and fluids. Another cause for admittance is that Davis refuses to eat or drink anything. The last time he really ate or drank was yesterday at lunch. There is a concern for dehydration. Bottom line: The doctors don't quite know what is wrong with Davis yet.

The doctors will re-evaluate Davis tomorrow and go from there. Hopefully, he will be able to come home tomorrow, but I do not want him home if he is not well.  Right now, he is where he needs to be.

Sadly, yet somehow comforting, Davis has ran into a couple of his new friends/old roommates in the hospital. It is unfortunate that Davis doesn't feel up to visiting; they are such sweet young men from great families.

All of this information is second-hand. I am relaying what Kyle has told me.

I am looking forward to hugging and holding my baby tomorrow. My job now is to pray, pray, and then pray some more.  Thank you in advance for your prayers and positive thoughts. We need them as always.

Mark 11:24:  Therefore I say to you, What things soever you desire, when you pray, believe that you receive them, and you shall have them.

My prayerful desire cloaked in faith: God is going to heal and cure my son.

Must All Good Things Come to an End?

8/30/2011:  11:14 AM



happy birthday, drew!



Davis had an awesome weekend. On Saturday, he was able to get out and about a bit. He saved all of his energy to hang out with his buddies for a few hours.  When I picked him up, I asked him if he had a good time.  He dramatically answered, "Mom, it was absolutely amazing." A good Saturday led us into a good Sunday. We had Friends Sunday at church. Davis sang in the children's choir and ran around a bit outside afterward.  We all had a great time visiting with family and friends.  Then came Sunday night.

Davis felt a bit warm to the touch and was complaining a bit of a headache. I took his temperature.  101.5. Kyle and I immediately jumped on every fever reducing wives' tale we had ever heard: bath, drink cold water, strip off clothes, sit up in a chair, etc.  The fever did manage to come down but it was still low grade. We called to Children's and luckily his ped. oncologist was on-call.  She advised us to go to Sarah Bush ER and get a CBC (blood count) and wait for further instructions. Since day one, Children's told us that this day - or night - would come, and the first trip to the ER is scary. Children's, along with many other parents who have been at this longer than we, tell us that ER visits become routine.  Sad, huh.



er trip #1

So we spent four hours in the ER on Sunday night. Everyone there did a fantastic job tending to us despite being busy.  Davis was given an antibiotic through his port to prevent a possible port infection. Port infections are what we are constantly trying to prevent. If a port becomes infected, it could cause sepsis in the blood, which could be fatal if not caught and treated.  That is why fever watching is critical. We waited for a good while to know his counts.  If his ANC (absolute neutrophil count, aka: immune system) was below 500, he would be transported to Children's. If it was above, we could go home.  The verdict: 770.  Yes. We were home by 10:00 PM.  Unfortunately, Davis still had a low grade fever and severe headache and nausea.



finishing homework

while waiting on radiation

Davis woke up on Monday and wanted to go to school.  I was going to let him sleep in, but he didn't want to miss school. He was a bit late due to some stomach upset but made it in time for one of his favorite subjects: reading. Kyle and I picked him up after lunch, and we headed to St. Louis for his first radiation treatment. 

before radiation



Radiation went well.  Only one parent was allowed to walk him back to the room, so Kyle went. The mask was really tight, but apparently, it is supposed to be that way. He was a bit nervous, but did great. He took our church's youth choir CD, and the music was piped into the room.  This helped to pass the time. After his treatment, we met with his radiation oncologist for a few brief minutes and then we were free to head home.

As soon as we left the hospital, Davis developed a severe headache accompanied with nausea. There was a lot of crying and whining and moaning coming from the back seat. Nothing seemed to make it better.  He refused to eat and drink as well.  Eventually and thankfully, he fell asleep right after Collinsville.



after radiation

It just kept getting worse from there. We finally made it home at 7:45 last night.  Davis's headache and nausea still hadn't subsided, so we tried to ignore it and follow a routine. We can't give him Tylenol because it masks fevers and other over-the-counter medications can react with his chemo, so often he is left to suffer, and our only means of treatment is prayer. He took a bath because he struggles to stand without severe head pain, and then he finished up some math and geography homework.  Another temperature read proved that his fever was once again up to 101.5.  So another call to Children's landed us back at Sarah Bush's ER at 9:30 PM. 



only cody could muster a smile
from davis

Again, we were well cared for. Another CBC and blood culture was done. He was given morphine for his headache and was soon asleep.  Cody, a friend from church, was his nurse. Seeing a familiar face relieved a ton of Davis's anxiety. Cody was so kind and stayed with us long after his shift ended. While we were waiting the results of his CBC, Davis was given a bag of fluids to prevent him from dehydration. Davis's counts revealed somewhat good news. All of his counts had increased. His ANC, which was 770 the day before, was now over 1600.  Despite the fever, migraine, and nausea, we were sent home. And as for the symptoms, no known cause.

We stumbled in the door at 3:30 this morning. Davis took another bath, and then I tucked him in. I hit the bed at 4:00.  Kyle, who stayed home with Annakate, got her up and ready and out the door allowing Davis and I to sleep in until 8:00 AM. Davis woke up with yet another severe headache- so severe, he couldn't sit up to take him medications. He was running a fever of 101+ again. I called the oncology clinic, and Kyle and Davis are on their way now for Davis to be examined.  He will be seen by the oncologist at 1:00 PM and then have radiation at 4:45 this afternoon.

Annakate has been struggling with homesickness and has developed symptoms of her own. She has tummy aches and headaches. Kyle and I are trying to split our time between the two of them. Kyle stayed home with Annakate the last two nights while I was with Davis in the ER, and Kyle is taking Davis to St. Louis today, so I can be home with Annakate. We are still trying to find the balance.  It's not ideal; that's for sure.



er trip #2

Please pray for Davis. He is in a great deal of pain. And it feels that the health professionals are dragging their feet.  Every time I hear that phrase, "Let's just watch and wait. Touch base with us tomorrow.", the mama honey badger in me comes out. I know that I am exhausted and frustrated from watching him suffer; I can't even imagine how he feels. We know that there are peaks and valleys in every cancer patient's road to recovery, and we know that we have been beyond blessed to have Davis healthy and well for so long. But knowing doesn't make it easier. We are praying that whatever this is is an easy fix and Davis will be well soon.

We still continue to pray off all side effects, both short and long term. We are praying that the doctors find the root of the fevers and headaches and that nothing is overlooked. We are believing with every ounce of faith we have and with all of our hearts that God is going to heal and CURE Davis, and that even with this illness, we are still trudging strongly forward in the right direction. We can't thank and praise God enough for the abnormally high ANC right when he needs it the most. God has some great timing.

Thank you for the continued support and prayers. We love and appreciate them and you.

We will keep you posted.

Another Friday - And Spinal - Down

8/27/2011:  8:30 AM


waiting and waiting



We made the familiar jog down to St. Louis yesterday. Davis received his IV chemo, which took all of five minutes. The real downer was that when the nurse accessed his port (stuck the nail in his chest), she didn't get a blood return, meaning she didn't have it in right, so she had to remove it and re-stick him. Poor thing.

We then met with his oncologist. She recommended that we, Davis, and everyone who is in considerable contact with him receive this year's flu shot. (Health officials actually recommend it for all children under 18 years of age.)This will lessen the chance that he will pick up one of the expected strains. Unfortunately, Annakate can not receive a flu shot because of her egg allergy; she can't have the flu mist either because of her asthma. We will just watch her like crazy, encourage good hand washing/hygiene, and pray sickness off of her.

At 11:00 AM, Davis received another LP (lumbar puncture, AKA spinal tap) where more chemo was inserted into his spinal fluid to protect his central nervous system. The nurse also administered the PEG shots while he was out. After he came to, we were off to the orthopedics office to pick up his chest guard. While waiting at the orthopedics office, we were encouraging Davis and reminding him of how brave he is.  He responded, "All of this (treatments, LPs, shots, etc) is wearing down my toughness."  I can't even imagine.  Still the bravest kid ever in my book.

ready for kickball

Davis had some adjustments made to his chest guard. This guard will allow him to play at school, at friends', etc. He could barely move when he was being fitted, and I noticed that when he tried it on at home, it didn't fit quite right, so I might have to make some final adjustments myself. But he is excited. He can't wait to be able to play at recess and participate in some PE.

Wade said he never gets his picture
taken not facing the camera :)

The 3rd Annual Kenneth Coffey, Sr. Memorial Race was last night. Annakate and Kyle, along with a bunch of other people, ran in it. Sadly enough, I didn't get a picture of either of them crossing the finish line. Davis's best buds and their little brothers were wearing shirts in honor of Davis.Team Davis shirts. Davis had planned to run or walk in the race, but wasn't feeling up to it. (Funny how two legs shots and a LP can slow you down.) Thank you, Jill.  Those shirts totally made his night.

Today, Davis feels much better. He is actually wielding his light saber in the living room as I type.

still managed to place
despite not consistently
training

Annakate is so funny. I keep meaning to blog about all of the funny stuff she does everyday, but it slips my mind. Well, Annakate has nightmares about hobos. Yep, hobos. That in itself makes me chuckle, because what seven-year-old knows about or even thinks about hobos? Kyle capitalized on her new fear and told her some tall tale about an Ashmore hobo that hides in the trees.  Now, she is always on the look-out for the Ashmore hobo.  Hopefully, her fears of clowns and people in costumes have subsided in lieu of her new fear of hobos. Update:  We just made it home from the Ashmore Day Parade.  Annakate still has a fear of clowns.

Kyle has been handling all of the insurance paperwork. What a headache. I am glad he is doing that. He can spend hours cross-referencing bills, highlighting key information, photocopying, making phone calls. He is amazing. And the cost this treatment - wow!  Davis's PEG shots are over $9,000. Can you believe that?  I am so thankful for insurance and cancer insurance and Kyle's dedication to number crunching. One less thing to worry over.

I am finding that our new routine is anything but. We have to take everything one day at a time, and the planner with the master calendar in me is really struggling. I still very much miss my school.  I think I am homesick for it. I miss its smell. (Yes, weird sounding when I type it out.) There is a comfort -a familiar comfort- that wraps around me when I am immersed in the smell of my school. And a few days ago when I was helping out at Davis's school, I glanced into a classroom and was for sure that I saw one of my former students, Grace, sitting in the second row. Homesickness. When you start seeing the faces of the familiar in strangers, you know you are homesick.  So again, the phrase I often tell Davis, I must swallow myself, "This too shall pass."

I missed the season opener at Oakland (my school) last night. I can only describe missing it in one word: sad. To make up for it, Annakate and I snuggled in bed and watched the last quarter of the Colts game.  Quite exciting, but not half as exciting as Titan football.  I was glad to see that the boys had won when I read the paper this morning. Good. They deserve it. I wish them all the best. I already told Davis that he is going to have to stay well so I can catch a game or two.  He bettered my demand by saying that he would go with me to the next one.  I am keeping my fingers crossed. 

We continue to be so thankful to God for Davis doing so well with his treatment. There are times that I actually forget he has/had cancer. We are truly blessed. I am reminded of this every time we go to the pediatric oncology clinic. My heart breaks all over again the minute I walk into that chemo lounge. Everything about that space is wrong and unnatural. But I know that this treatment Davis is going through is a means to an end, and end to cancer and the beginning to the rest of his long, lovely life.

Davis starts radiation on Monday. He will continue radiation into the next week. On Friday, he will receive yet another LP (spinal) and more IV chemo. Our prayers are still the same. We ask God to protect his little body from short term and long term side effects, and we ask God for healing and a CURE.  We also pray for the his health and the health of his friends and the children with whom he goes to school and church, and we do the same for Annakate and the children in her class. We never grow tired of praying the same prayers, for we know the good that is coming from them. I feel we must not grow weary, because there is a little life dependent upon it - upon us. We thank you for praying with us, for sharing our burden.

Here's to a great week.  We will keep you posted.

Finding a Routine

8/24/2011:  2:00 PM

We are trying to find a new routine - just part of our new normal. The last couple of days have been great. I gave Davis his chemo on Monday before school. He had to go to school accessed (which I am not a fan of).  The home health care nurse was able to meet him at 10:00 at his school to draw his CBC (blood count) and de-access his port.  Kyle and I met her there, and we were able to do so in the makeshift bedroom that the school has set up for him out of a rarely used interventions room.  We try to avoid the nurse's office as much as possible because of the traffic of sick children. The whole blood draw and de-access thing was about ten minutes tops, and he was back to class. He had an awesome day at school and even came home and took a dip in the pool. 

Tuesday was equally as good. It was the first day that I dropped him off at school and came home.  I think I need to keep tabs on him more than he needs me to keep tabs on him.  Anyway, he went out to recess for the first time. He loved it; he only wished that he had his chest guard because he was ready to play and couldn't. His chest guard should be in at the end of the week.  The chest guard will protect his port while he does some mild PE and recess. He still won't be able to play football with the majority of his friends, but Frisbee or tag are  not out the of question. His buddy Wade is kind enough to volunteer to stay inside and play games with Davis, but Davis encourages him to go out and play. Davis feels guilty asking Wade to give up his recess time to stay inside. Wade doesn't mind, but Davis doesn't get that. They are too considerate of one another, which is incredibly endearing. Soon, Davis will be able to join everyone out on the playground, so it shouldn't be a problem.

Yesterday, we received his counts from Monday.  Wow!  Night and day difference from last Wednesday. If you remember, last Wednesday his white blood cells were around 2.2 and his ANC (immune system basically) was over 1700.  (Healthy children are over 1500.) We were tickled that he had such a high ANC being in school despite being on chemo.  Well, we know the chemo is working now. On Monday, his white blood cells were .6 (healthy kids are between 5-10) and his ANC was 279. Yikes!  The nurse told me that he should continue to attend school as long as he felt well enough to go even though his numbers are low and that he needs to really be routinely washing his hands.  As a precaution, Davis does wear a mask nearly everywhere. He has gotten into the habit of removing it for a second when I pull the camera out of the purse for the pictures.  So thoughtful.

Today, Davis woke up with some dizziness and a pretty bad headache. We put a call in to the doctor, and despite his illness, we tried to keep the morning routine, adding a pain killer to it. A few phone calls later, we are still trying to piece together what is wrong: dehydrated? spinal migraine? acid build up? drop in hemoglobin? Davis will get another CBC today, so we may have more answers tomorrow. If not, we will see the oncologist on Friday pending he doesn't develop any more symptoms in the meanwhile. I did stick around his school this morning to keep an eye on him. He felt much better and was doing fine. Huh.



bed upgrade



Kyle and I managed to update Davis's bedroom a bit. He received a very generous gift card from the organization Friends of Kids with Cancer, and he decided he wanted a new bed.  He has been abundantly blessed with toys, games, puzzles, galore, so we thought that was a good choice too. He picked out a loft bed with a futon underneath.  Great way to update the space. He is ready to start planning slumber parties again. I am convinced that loft beds were solely intended for college students who never plan on making their beds, because making that loft bed was close to impossible. After eighteen minutes and a near throwing tantrum later, I gave up. We will conquer that a different day.

On Friday, Davis will receive a new chemo. He has had it before, but hasn't had it in a while. It will be re-introduced. It has some yucky side effects: jaw pain, hand and feet numbing, leg muscle weakness. This medicine tends to give Davis a little trouble, as he has experience all of the side effects to some degree.  He will also get the dreaded chemo called PEG. It is a set of two gigantic shots that are shot into the upper leg muscles at the same time. It's is horrible. I nearly became faint watching the last time. They are terribly painful too. If there was just one thing I could do for Davis to lightened his load, it would be to take these shots for him. Obviously, it weighs pretty heavy on his mind, and the doctor, despite concerns for reactions, has agreed to administer the shots while he is under anesthesia. He is spared the anxiety of the actual needle, but sadly he will still feel the pain of the aftermath. We just have to keep reminding him that this too shall pass. Speaking - I mean, writing - of anesthesia, Davis will receive another intrathecal dose of chemo (spinal tap).  If he breezes through Friday, he will have the weekend off (chemo free). 

He has big hopes and plans for the weekend. One of his best buds, Drew, is turning ten, which means it is time for a celebration, and it's Ashmore Day, of course. Not to mention, Friends Sunday at our church.  We are not exactly sure what he will be able to do, if he is allowed to or up to doing anything at all. It all depends on how he feels, his health, his counts, and the doctor's orders. Davis gets kinda stuck in the whole my-mind-feels-healthy-and-is-ready-to-go-but-my-body-won't-cooperate situation. My guess is that it is similar to what I feel at times. Most days I still feel seventeen years old, but my body sure slows me down. I am sure I am not the only one out there.  Some of you may know what I am feeling.

We continue to appreciate all of your positive thoughts, concerns, and prayers for Davis and our family. Outside of God Himself, it provides us the stability we need.  We ask that you continue to pray against the side effects, including any possible side effects from the radiation he will start on Monday.  Most importantly, we continue to ask that you pray with us that Davis will be healed and CURED from this cancer (and any secondary cancers) forever.  We draw comfort from knowing that we are not fighting this alone.

We will keep you posted.

Good Friday, Better Weekend

8/21/2011: 7:00 PM

ready for the donut machine

As usual, Friday started very early. We were in St. Louis by 8:00 so Davis's port could be accessed and a type and screen could be done for his transfusion. 

We then headed over to the Siteman Center for his radiation appointment. Davis was given a CT scan, and then fitted for his mask. Frankly, I still find the mask thing to be quite terrifying, but Davis doesn't seem to mind. What bothered me the most about the experience was that we weren't allowed to be with him.  We have been fortunate to be with him for nearly experience. We are even allowed in the procedure room until he is under anesthesia when he is given his spinal taps, so to be ushered into a waiting room was quite an adjustment. The appointment was short and Davis was fine, so I guess I will adjust. 

scary looking, isn't it?

We spent the rest of the day in hemo/onc clinic or the procedure clinic. Davis was transfused in clinic until it was time for his spinal.  While waiting in clinic, Kyle and I met with Davis's newly assigned psychologist, and then she met with Davis for a bit. Children's does a fantastic job at treating the whole child. Davis will meet with Dr. April on and off throughout the length of his treatment. She is going to start biofeedback therapy soon. This is going to teach Davis healthy coping mechanisms and teach him how to reduce anxiety, something that he suffers from (rightfully so). He was really impressed with her (as were we), and I think he is excited about learning the skills she has to offer him.



lines and dots courtesy
of radiation prep



Davis is a pro at LPs (aka spinal taps). Once he was awake enough to be transported upstairs, we headed back up to the clinic. He received the remainder of his blood and his chemo.  We were able to head home before rush hour - a plus.

Our nurse coordinator contacted a local nursing agency that is able to assist us with administering chemo, accessing and de-accessing the port from home.  One nurse met with us and watched us administer the chemo on Saturday, and one will come on Monday to draw a CBC and de-access his port. Davis will start getting bi-weekly CBCs because his counts (red blood cells, white blood cells, platelets, and ANC (immune system)) are expected to drop considerably. :(  He may need weekly red blood or platelet transfusions, and/or he may need to stay home from school if his numbers prove to be critical. We are praying that this is not the case, but we understand that the drop in counts is a good sign that the chemo is working.

after LP, sleeping off the anesthesia

With the exceptions of some nausea and a decrease in appetite, Davis is feeling pretty well. We have had a relatively normal weekend. We had the opportunity to visit with family and go to church. Lately, there has been plenty to do at home, so it has been a blessing to be at home so much. 

We will give Davis chemo before school tomorrow, and as long as he feels well, he will go.  The routine of school and homework keeps us very busy here.  It seems our routine becomes school, supper, homework, chores, showers, sometimes reading if not done with homework time, bed. I don't know how other families do it, but it seems that we have very little time for down-time or TV, which is fine by us.



beautiful smile on an amazing young man



This morning, our preacher shared a thought in his message that struck a chord with me. He said, "Your strength is from the struggle."  He shared an analogy of how a hatchling - a chick - struggles to break free from its shell, but through that struggle, it is made stronger; it builds strength.  Sorta like the old cliche, "That which does not kill you, makes you stronger."  I agree. Don't get me wrong; I HATE CANCER. I hate seeing my son suffer. I hate feeling helpless at taking his pain away.  But I love the lessons that our family is learning from this experience. I love how it has drawn us closer, slowed us down, helped us to focus on the most important things. I love how it has made us more dependent on one another and on God. We are truly learning to lean. We continue to marvel at our many blessings.

Our most earnest prayer is that Davis is healed completely and forever - CURED.  We are with full faith believing that Davis will not relapse. We continue to pray that Davis is spared from both short term and long term side effects. We pray that Davis, his classmates, and all of the fifth graders remain healthy this year, so Davis can attend school as often as possible. We pray for Annakate's health and the health of her classmates as well.

We are forever grateful for your continued prayers and positive thoughts. The support we have continues to touch us deeply. We have family and friends like no other. Thanks to you, we truly feel that we are not fighting this alone.

We will keep you posted.

Yay! School

8/19/2011: 12:19 AM

And I thought my life was crazy before cancer.

The kids started school the day before yesterday. They both love it. Yesterday, I presented a little powerpoint to Davis's class. He was supposed to help me, but he left me high and dry. The presentation covered some basic questions kids might have (What is leukemia? Why does Davis wear a mask? How did he get it? etc.), but the focus on the presentation was to inform the kids of the importance of good hygiene and not coming to school sick. The kids were so attentive. We learned hand washing techniques, wiped down tables, and wore masks to see how Davis felt in them. I just love how they embraced the extra lengths we are going to in order to make Davis safe at school. Kudos to these fantastic children for adapting so well and looking after Davis.

Later on Wednesday, Davis had to go to Sarah Bush to get his weekly CBC count. The last few visits, we have run into problems with his blood clotting. It happened again this week. He hates when this happens because it means another finger prick. On the second draw, the nurse used this new gadget that actually pulls the blood off of his finger, puts it in the tube, and circulates air in it to keep it from clotting. Pretty cool. We are requesting it from now on. 

Today was Davis's first full day of school. His chemo destroys his appetite, and he refused to eat breakfast.  Unfortunately, he still has to take his morning medication. He ended up with a rotten belly ache. On top of that, he had a horrible headache that he couldn't shake. I dropped him off at his room and made sure he was situated and then headed out. Unbeknownest to him, I busied myself at his school by helping the school nurse with some paperwork. This allowed me to check up on him, give him his space, and be close by if needed. Total win-win. With the exception of a little sleepiness, Davis had a perfect day. He loves his teachers, class mates, . . . everything.

I got a call from the doctor's office today with his counts from his CBC.  Overall, the numbers were pretty good. His white blood cells were still low at 2.2 (normal is about 5, I think). His ANC (immune system) was up to 1700 (above 1500 is considered healthy), which is very uncharacteristic.  His hemologlobin took quite a hit, and he had dropped to a but above 7, so he will receive a pint and a half of blood tomorrow morning. That completely explains the headaches that he has been experiencing the last couple of days.

awesome new gadget

With the blood transfusion pushed to 8:00 in the morning, we had to rush home to get packed for the weekend (Davis has chemo the next four days).  We received a phone call minutes after we settled in. It was one of those you've-got-to-be-kidding-me phone calls. Sadly, our credit card was compromised somewhere or somehow, and we had a couple of thousand dollars charged to our account over the last couple of days. Luckily, we are not being held responsible for the fraudulent charges, but we are without a credit card. Kyle is wonderful about calling the proper people and places to make sure this issue was resolved. It's odd though; even though it is all working out, I still feel a bit violated. I comfort myself by thinking that some deserving child out there received a really nice computer and a couple of pairs of new tennis shoes to help him/her at the start of school. 

The inconsistency of routine caused by living with cancer is really beginning to wear on Annakate. She struggles with homesickness. She wants to attend every single doctor's appointment in an effort to keep us in sight. She has no desire to be away from us. She has been coming with us for most of the appointments and procedures, but now that school has started, it is impractical. She listens to reason, and I explain to her, "Now Annakate, if you had to go to the doctor's office and then get a spinal tap, you would want Mommy and Daddy with you, wouldn't you? We will be home as soon as we possibly can." She nods politely, not making eye contact. She understands, but it doesn't make it easier. I couldn't agree with her feelings more. I hate to be away from her. 



1st day of school



Tomorrow will be a full day for Davis. He will receive a blood transfusion, be fitted for his radiation mask, have a chemo treatment, and then have a LP (lumbar puncture) to place chemo into his central nervous system. I am ready to have it behind us.

We feel that the only explanation for Davis doing so well with his treatments thus far is because of the prayer that has been offered up on our behalf.  We love and appreciate your prayers so very much. You should know that they are working.  We ask that you continue to pray against short term/long term side effects, but most importantly for the healing and the CURE, as that is our ultimate desire. We will continue to praise God through this storm. It seems that blessings are far more noticeable than they used to be.

Thank you for your continued support.

We will keep you posted. 

8/15/2011:  10:20 PM

I know, I know.  I have been doing a rotten job at keeping the blog updated. It has been quite a whirlwind around here.

Let me catch you up. I can't remember when I last blogged . . . Friday, was it?  Well, Friday was spent in clinic. We were shoved in a little examination room from 8:30 AM to 5:05 PM. Thank goodness for the Ipad and Annakate. The Ipad provided the mind-numbing stimulation, and Annakate provided the entertainment.



good fun with friends



We headed to the hotel shortly after where we spent the next few days. Davis obviously spent a lot of time in the room. He didn't mind it too much. He has fallen into a routine of hanging out in his pajamas and watching TV. A few families from church were there for their annual planning committee weekend, so Annakate had a few friends to play with, which got her out of the room.

Once again, we are reminded in the power of prayer. The medication that Davis started on Friday is notorious for making children extremely nausea and sick with flu like symptoms. Many children are hospitalized because of dehydration. We were prepared for this. As a precautionary measure, we have been giving him anti-nausea medication around the clock, and he wears seabands (acupressure bands on his wrists) quite a bit. Although Davis does have bouts of nausea, he hasn't been sick once (so far). Thank you, God. All weekend, he continued to have energy and his counts appeared pretty strong going into the chemo.  We know that his counts (ANC, red blood cells, platelets) will continue to drop. The doctors told us that he may bottom out as early as next weekend (also called nadir). This means that he will probably not feel well (usually very weak and achy) and school will be held at home until his counts are in a safer range again.  Today, we started seeing a side effect of this chemo - zero appetite. Last month, we had to keep in from eating everything in the house (due to Prednisone), and now we have to force him to eat and drink.  But we aren't complaining; we know that we are so blessed that Davis his tolerating this chemo so well, and my heart breaks for the children who do not.

it's amazing how
well they get along



Today we met with the radiation oncologist at the Siteman Cancer Center. This is not part of Children's Hospital but is in the same Barnes Complex. To be honest with you, I had some severe stress over this radiation. To me, it felt that I had just come to grips with all of the changes and risk, short term/long term side effects, that accompany chemo; I wasn't ready to deal with one more thing.  Ok. Back to the appointment. After filling out a bit of paperwork, we were called back to an examination room.  A doctor, a fellow I presume, listened to the back story of how we ended up here, gave Davis a complete physical, and told us about the procedure.  Then, Davis's primary radiation oncologist, Dr. Mansur, came in and repeated bits and pieces of what we had completed with the fellow. Davis will receive the lowest grade radiation (12) to his brain for ten minutes a day for eight days in a row. We discussed the short term and long term side effects, and many of my major concerns were not issues because of the grade, length of duration, and length of time Davis will receive radiation. The most common side effect Davis might experience is sleepiness. The reason for the radiation is a preventative measure to keep the brain free of cancer. 

After the visit, Dr. Mansur's nurse, explained to and showed us how Davis will be fitted for a mask (hard plastic Spiderman looking thing) and  how the procedure will go down. They took us into the room where Davis will be getting his radiation, and they showed Davis how everything works. The mask will be placed over his face and bolted to the bed to keep Davis perfectly still (very scary in my opinion).  The radiation machine will circle his head for ten minutes (looks like a CT scanning machine), and then he will be free to go. Davis really thinks that he can do it without being sedated, and  Dr. Mansur is willing to give it a shot. I know for a fact that I couldn't do it with sedation. Actually, I would like them to sedate me when Davis does it. No can do though. :) I must say that St. Louis Children's and Siteman's do a fantastic job at catering information to Davis.  At every appointment, the conversation is geared to Davis and his questions and concerns. It seems the doctors are talking to him and not so much to us. I love it.



nurse kyle giving
davis his chemo



I nearly forgot to tell you the most exciting part. Kyle and I were taught how to administer Davis's weekend chemo. This will allow us to do some chemo at home. Since Davis tolerated it so well this weekend, we are able to administer it at home (most times). This will allow us to give him his Monday chemo and de-access his port all before he heads off to school.  This also means that we will be able to be home with Annakate.  Administering the chemo takes about 30 minutes total, and I was a whole lot more comfortable doing it than I thought I was going to be. Kyle is great at it; I think it fits his hands-on personality.

We will be heading back to Children's on Friday for more chemo. We will continue with the 4-day chemo he is on now, and he will have a LP (lumbar puncture) to put chemo in his spine. We refer to them as spinal taps. In the meanwhile, the kids will be starting school, something he is looking forward to; and we will be watching his counts.



my turn



We continue to appreciate your prayers for good health and strength and prayers for tolerance of the spinal tap (last one made him pretty sick). We pray against ALL side effects.  I have even started to pray for children in his class that they may practice good hygiene and be super healthy all year long.  Why not? We know what God can do.

I count my blessings every day and marvel at God's goodness.

We will keep in touch.

The Next Phase

8/12/2011:  1:57 PM

Wow. Where did this week go?  I apologize for falling behind on the blog.  It has been a hectic few days.

Davis has felt awesome all week.  He has felt close to his old self. He still manages to nap every day, and he still grazes between meals, but other than that (and the obvious medication routine), things felt back to normal.



Dr. Coffey and the floating head prepping
the patient

On Wednesday, Davis was entertained by Annakate. She is amazing. She has such an imagination and figures out ways they can play together. He rested most of the day to save energy for church. I was very apprehensive about letting him go to his Wednesday night church class. It is safe to say that I have morphed into Marlin, Nemo's dad, nearly over night. It just goes to show that God provides you with the perfect soul mate, because Kyle is a nice balance to my overprotective, stick-my-kid-in-a-bubble approach. Kyle thought attending class would be perfect timing since his counts were building and we had an appointment on Friday (usually sickness takes two days to manifest).  The doctors also feel it is important that we try to provide him with a seemingly "normal" life when his counts are high enough. He loved it.  Despite the precautions put in place, he enjoyed it and participated in everything with the exception of tug-of-war. A few of the girls, with their sweet nurturing spirits, looked after him. He now refers to them as his bodyguards.



performing the procedure

On Thursday, I met with his school principal, district nurses, and his fifth grade teacher. They are really bending over backwards to accommodate Davis and his needs. I am so appreciative of their willingness to go the extra mile to make Davis feel normal and included. And I know very well as an educator myself, that many of the accommodations and arrangements they are making are not required, and this is just another example (as I have heard many in the past) of how the administration and staff place the well-being of their students first. I am really looking forward to easing into the school year. Jefferson feels like home already.

annakate provided entertainment by using her hair
to make unibrows, moustaches, and goatees

On Thursday afternoon, Davis's friend, Drew, brought him a blizzard. They were able to visit for awhile too. It was the highlight of Davis's day. Unfortunately, I have very little details (and no pictures) because I was meeting with the teacher who was hired to replace me this year. I am never shy in saying that I work in one of the best school districts in the world and we function as a close-knit family, helping and leaning on one another. Needless to say, asking for a year off was heartbreaking for me. I love my job. I love the students I have been privileged to teach and befriend over the years. And I have figured out that the joy and happiness and worry they bring to me every day far outweighs what I have to offer: English knowledge and a listening ear. I know they do more for me than I feel I can do for them, so that is why this temporary leave is so difficult. I am grateful; however, to be able to leave my students in good hands, so that I can focus my attention and care on my son. 

taking advantage of the cooler temps

 Davis's ANC (immune system) was below the recommended 750 required for the chemo scheduled to start on Friday. His was 704. We were told to come down to Children's on Friday, and the CBC would be repeated. If his levels were too low, chemo would be postponed a week while his counts continue to build.  That brought us to today.

The doctors decided it was a go on chemotherapy today even though his numbers might not be ideal. They said there is no real risk and felt it was appropriate to pass on to the next phase. One of the chemo meds he is getting today requires major hydration to protect him from bladder irritation and bleeds. Our appointment this morning was at 9:30, his port was accessed at 11:00, and he is just now getting ready to receive his first chemo treatment. He had to be hydrated for up to two hours previous to the treatment and four hours after the treatment. We are hoping to be out of here by 5:00 or 6:00 PM. My, this makes for a really, really long day. Kids weren't designed to sit around this long.



being casted for chest guard

Oh, Davis met with an orthopedic and prosthetic specialist to be casted for a chest guard.  This will allow him to participate in mild or moderate PE and recess activities and more importantly, baseball in the spring.  He was able to pick out a design/color for his guard, and he chose camo.

We will be down here the rest of the weekend. Davis has three more days of chemo.  For awhile, his chemo treatments will be Friday, Saturday, Sunday, and Monday.  We meet with the radiology oncologist on Monday.  We were relieved to find out that Davis will only have two weeks of cranial radiation this first wave of the consolidation phase.

We have been reminded quite a few times today that this phase is as equally intense as the induction phase. Many children struggle with the side effects of the medications. We are praying these side effects off of him. We are praying that he will take this chemo well so that he can attend school for as long as possible. And of course, we pray every night for his healing and his CURE.

Thank you a thousand times over for your continued support and prayers. We draw strength from knowing that we are not fighting this alone, because we have an army of family, friends, and prayer warriors behind us.

We will keep you posted.

No News is Good News

8/9/2011: 10:56 PM

We really enjoyed ourselves last night. After Davis's P.F. Chang's experience, we hung out in the hotel and ordered a pizza for supper. He was feeling much better by evening and we were feeling couped, so we jumped in the car for a quick ice cream run. We relied on the TomTom to help us find an ice cream joint.  We were very excited when Edy's popped up on the TomTom. We followed the directions to an industrial park. Yep, the Nestle factory where Edy's ice cream is made. Not what we were expecting -- and no ice cream. We have to hunt and peck through ice cream shops because Annakate has an egg allergy, and many ice cream places use eggs in their recipes. After sorting through the TomTom list and out of fear of car sickness, we settled on an Oberweiss. As we were pulling into the parking lot, Davis blurts, "I am so lucky that I don't have an egg allergy, because that would stink." He cracks me up.

panera breakfast

We took advantage of our mini-vacation, and the kids and I stayed up until midnight to watch The Blind Side. They loved it. I had seen it before, but it did remind me how much I enjoy watching football. 

Pretty good day. We headed home from Chicago mid-morning, and boy, the drive felt unusually long. We tried to break it up some with little bathroom and drink breaks here and there, and we did stop and enjoy lunch and a little shopping in Champaign, but the ride was long. There's no place like home.



short hair



even shorter hair



We received a phone call from Davis's hemo oncologist. She had failed to mention part of the plan during our Friday discussion. She opened the conversation with "I have some news, and it's not bad by any means." I really think that is subjective. She informed us that the unofficial path report on Davis's bone marrow draw concluded her thoughts that his bone marrow is making about 3% of cancer blasts, which means he is in remission. She also shared with us that Davis will be starting cranial radiation in three weeks. This information was quite a surprise, as this had never been mentioned at previous appointments. She explained that Davis is high risk for relapse, and often if the cancer returns, it returns to the brain. The goal of this consolidation phase is to keep pumping chemotherapy into his central nervous system via spinal fluid and irradiate his brain to catch what the chemo doesn't.  This, of course, means more doctor's appointments and more short term and long term side effects.  So on Monday, we will meet with the pediatric radiation oncologist for a consultation.

Davis continues to shed. We decided it was time for yet another shorter haircut. The shorter do makes the thinning a tad more obvious. I think that adjusting slowly to the idea of being bald is the best approach for Davis. He sure has had hair a lot longer than expected.

This day has proved to be a long one, but an enjoyable one too.  Kyle focused devotions tonight on Proverbs 3:5-6: "Trust in the LORD with all thine heart; and lean not unto thine own understanding. In all thy ways acknowledge him, and he shall direct thy paths." I tell you, these scriptures have taken on such a deepened meaning as we continue to turn over our worry to Him. 

At this point, we know very little about the upcoming chemotherapy and radiation treatments.  We will learn more (and trust me, I ask a ton of questions) this Friday through Monday. My every prayer is that Davis will first and foremost be healed and CURED of this cancer. We continue to pray against ALL of the short term and long term effects, and we pray for his good health and strength to fight. With school starting soon, we pray for Annakate's health as well; it is important that she stays strong and healthy too. We ask that you continue to pour on the prayers and positive thoughts for our babies. We love, appreciate, and need them.  

We will keep you posted.  

Getting Back to Summer. . . Just in Time

8/8/2011:  5:20 PM

We had such a pleasant weekend . . . for the most part. Davis is chemo free for the week (other than what was put in his spine on Friday). The doctors cleared him for a few days of R and R while his counts build for phase two chemo on this coming Friday.  We are still very cautious because Davis's immune system is suppressed, and he is required to wear his mask while in public and wash his hands incessantly. He does take his mask off to eat and for pictures on occasion.



nothing is better than
fair food



Saturday, we were able to go to the fair long enough for Davis to fill his craving for fair food. We were nicely surprised when we discovered that there was all of thirty people on the grounds. I guess we picked the right time to go. After he had his much-craved orange shake-up, nachos, and snow cone, we headed home. We had an impromptu cookout with family, which provided much needed fellowship. Davis fizzled during the cookout and ended up on his little futon in front of the TV.  A few hours later, Davis was doubled over with intense tummy pain. We called the doctor who told us to wait it out a bit.  After some Oxycodone, he was peacefully resting. 



gotta love these kiddos
and sis. dee

On Sunday, Davis woke up with a migraine. He still managed to get ready for church. We are sure to sneak in and sit in a secluded area. I head in early and wipe down the area with Lysol wipes, which has become second nature whenever we venture out in public. Davis's headache got the better of him, and he fell asleep and slept the entire service. As he was sneaking out to the car, his friends, very eager to visit with him, posed for a quick picture.



waiting for food and fun



Davis was hoping to go to the Dixie Stampede for vacation this year, but the drive to one is longer than he can bear riding in a car. We decided that the Medieval Times might suffice. We headed up to Chicago after church and attended the show. The kids loved it!  It was quite a hit.

We had fears of staying in a hotel because of all of the germs. We took precautions by Lysol wiping all the surfaces down and spraying Lysol on the bedding and carpet. We brought his own bedding, and he wears shoes in the room. I guess we can never be too careful.



P.F. Chang's  . . . before the
first bite

 Davis has been complaining for the last couple of days that his skin hurts. He kept telling us that he had a sunburn. We knew he didn't because he had not been outside long enough to warrant any concern.  I figured he had dry skin. He doesn't like using lotion, and he has been soaking in baths much more than he ever has in his life. Dry skin . . .yep. I have been rubbing lotion on him since Saturday, and I picked up some Aloe after church and rubbed it up under his shirt to put his complaints to rest. Last night, it was a surprise to see that he had developed a lacy rash. Once again, another phone call to the doctor was made. It was agreed that it was probably a reaction or side effect of the Methotrexate that was placed in his spine. We are watching him for fever just in case it is not a side effect and is the beginning of a bacterial or viral infection.


he'll sleep well tonight

We ventured out today some. It was short lived. We ate a P.F. Chang's, and Davis became sick on bite #1 . . . headache, belly ache. We headed back to the hotel room, where he took a nap and woke up in a much better state. He even felt up to swimming. The hotel that we were staying at has a fantastic and super large indoor pool. The chemo medication placed in his spine makes him extremely sensitive to the sun, so the indoor pool was ideal. We practically had the whole pool area to ourselves (minus one other person).





We are so thankful that Davis and the rest of us were able to get away, even though it was short lived. And with the exception of a few hiccups, Davis has felt well and continues to build strength. We plan on using the rest of the week to get our affairs in order for the beginning of school.  I can't believe how quickly it is approaching.

We ask that you pray for strength for Davis. I worry about the upcoming chemo days that coincide with the starting of school. May the side effects be non-existent. We still pray for healing and CURE, as these are of the utmost importance. God works in His time, not ours.

Thank you. Thank you a thousand times over for praying with us.

We will keep you posted.