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.
Tuesday, September 13, 2011
Sunday, September 11, 2011
A Week Off
9/11/2011: 9:53 PM
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.
We will keep you posted.
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?
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| 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.
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| 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.
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| 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.
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| 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.
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| 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.
Monday, September 5, 2011
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.
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.
And as always, we will keep you posted.
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.
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| 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.
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| 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.
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| 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.
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| 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.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.”
And as always, we will keep you posted.
Wednesday, August 31, 2011
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.
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.
Tuesday, August 30, 2011
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.
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
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.
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.
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.
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.
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.
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.
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| 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.
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| er trip #1 |
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| finishing homework while waiting on radiation |
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| 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.
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| after radiation |
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| only cody could muster a smile from davis |
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.
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| er trip #2 |
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.
Saturday, August 27, 2011
Another Friday - And Spinal - Down
8/27/2011: 8:30 AM
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.
Today, Davis feels much better. He is actually wielding his light saber in the living room as I type.
Here's to a great week. We will keep you posted.
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| 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.
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| 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.
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| 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.
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| 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.
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