A few people have mentioned that they were unable to find the order forms for Team Davis t-shirts. I assume that the information was buried in a post somewhere.
If you are interested in ordering a shirt, you may do so by clicking on the link below, printing the form, and mailing it and payment to Mandy Hanner, c/o Oakland High School, P.O. Box 378, Oakland, IL 61943.
Team Davis T-Shirt Order Forms
Just a reminder that the orders are due on Monday, October 31.
Also, for those who do order shirts, feel free to email, mail, or facebook (can that be used as a verb?) me a picture of you in your Team Davis t-shirt. I am going to make a photo album/memory book for Davis from his supporters and prayer warriors. Please specify if you do not wish for your picture to be posted on the blog; many pictures end up here.
email: abcoffey77@gmail.com
address: 9208 N Co Rd 2270E, Ashmore, IL 61912
Thursday, October 27, 2011
The Week Keeps Getting Better
10/27/2011: 11:33 AM
The week started out a bit rough but continues to improve.
On Monday, he devoted himself to school work, Wii playing (I told him that it was his PE time), and sitting around and complaining in true 10-year-old fashion.
What else is going on? Hmm. Annakate received a trophy in the mail for being a good sister to Davis. She is enrolled in this organization called SuperSibs. The organization sends her something to make her feel special about every month. This is such a great program. I hate to admit it, but I don't find myself doting on Annakate like I used to. Instead of doing her hair in the morning, I am getting Davis dressed or giving him his medication. Instead of reading her bedtime stories, I am helping him with his homework. While Kyle and I do make an effort to devote individualized attention and time to her, the program helps us by surprising her with encouragement. Plus, she feels so important.
We love living in the country. We have fantastic neighbors (In the country, everyone within a five-mile radius in any direction is your neighbor.) who look out for one another, and the space allows the kids to run and explore. I love the opportunities that country living and nature provide to my children. The wildlife alone creates our own hands-on encyclopedia. Over the course of a week (depending on the season), it is not uncommon to see hawks, owls, vultures, quail, deer, raccoons, stray cats, skunks, opossums, snakes, and coyotes in our yard. Yesterday was no exception. My normal morning routine includes opening my kitchen blinds allowing the natural light to flood in to warn everyone -mostly me- that morning is indeed here. I think I gasped before a smile broke across my face when I saw our neighbor's horse grazing by the trampoline. What a delightful surprise to the morning! No worries. I called my neighbors and the horse was home safely in its fence in no time. I sure hope the horse manages to make it over again sometime. I think my neighbors sure hope it doesn't.
Davis has developed mouth sores (very common). He has been pretty fortunate to not have too many until now. I believe that it is the methotrexate that he receives in his port that is causing them, because that was the only new chemo added. Methotrexate causes mouth sores. He has been faithfully using Biotene for months, but it simply isn't enough. He has started using a rubber-finger style tooth cleaner for infants, because even the softest of toothbrushes still cause his mouth to bleed. The doctors will check out the mouth situation on Monday. I hate it that he has mouth sores. I don't want anything to hurt him or impede his ability or desire to eat, but I can't help but think that if this is the worst of it, he is still very blessed.
We continue to pray every day for our son. We still pray against side effects, for Davis' emotional well-being, for the health of the kids in which he comes in contact, for healing and CURE. I can't help but feel that there are many life lessons to be learned from this experience, and I thank God for the blessings - the silver lining in all of this - that we have received and continue to discover. We still pray for courage, strength, and endurance, because sometimes they appear to be in short supply. We know that we still have such a long road ahead. We are so moved by your thoughts and prayers. I can only imagine how families are crushed under the weight of carrying this burden - this battle - alone. We are overwhelmed and grateful for the support we have. Not one day goes by that we don't feel both amazed and unworthy of your relentless thoughts and prayers.
We will keep you posted.
The week started out a bit rough but continues to improve.
Davis was very nauseous and tired on Sunday evening and decided to regress to some behavior we thought was behind us. He refused to take his last dose of medication. After hours of pleading and arguing, Davis was so worked up, he was out of control. Near midnight, Davis had a panic attack and couldn't breath. The thought of Davis suffocating terrified me, and I called 9-1-1 while Kyle worked on settling him down by encouraging deep, slow breaths. Thankfully, Davis was able to calm down before an ambulance was dispatched. Davis finally relaxed enough to fall asleep in the recliner in the living room. He never did take that last dose of medication. Luckily, it was a side effects medication and not chemo medication. The house quieted down and all were asleep by 1:00 AM. Poor Annakate! There was no way she could sleep through all of that chaos, though she didn't complain. She has such a tender heart. She worries as much for Davis as we do.
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| Wii = PE at home |
Monday. The night before had been erased from his memory and the new day brought with it a better frame of mind and a good start. We were headed to Charleston when I checked in with his school. Sadly, there were several students who were out sick from his class or exhibiting signs of sickness in his class (little coughs, headaches, scratchy throats). Davis had to stay home. Davis might feel great, but since his immune system is suppressed, he is at greater risk for catching a virus or infection. Since he is unable to fight off infection by himself, he has to be hospitalized so the doctors and medication can fight the infection/virus for him. So there are times when he is perfectly well and capable of going to school, but the health of others prevents that. It's inevitable; kids get sick. Davis, however, didn't handle Monday well. He didn't see how it was fair that he had to stay home. His "not fair" list has grown longer and longer over the past few months, and I get sad for him and for me that I can't fix some of the injustices that go along with cancer and its treatment. The only comfort that I can offer him is telling him over and over again that this is not permanent, and this will not last forever, but to a 10-year-old, I am sure that it sounds like too much of a cliche to be true.
On Monday, he devoted himself to school work, Wii playing (I told him that it was his PE time), and sitting around and complaining in true 10-year-old fashion.
On Tuesday, he went to school. The kids in the class are feeling much better and appear healthy. Davis takes a few more extra precautions to be at school (wears mask all of the time, extra hand washing, etc), but he is so happy to be back. He has been attending school all of this week. He fizzles in the afternoon. He doesn't really have the energy to sustain the activity of a full day. On Tuesday, he took a nap at school. On Wednesday, I picked him up early so he could come home and rest. That's ok. He loves school, and he loves being there.
Davis's appetite has increased some. We can relax a tad because he is eating and choosing healthy choices, but I can't truly relax until he starts putting on weight. We head to the little convenience store in our village, I and I Deli, and Davis orders a hot ham and cheese sandwich every morning. I offer to make him hot ham and cheese sandwiches, but Davis seems to think that no one can make them as good as Tim can, so we will continue to eat Tim's hot ham and cheese sandwiches as long as Davis craves them. His appetite seems to be the best on the morning and decreases as the day moves along.
What else is going on? Hmm. Annakate received a trophy in the mail for being a good sister to Davis. She is enrolled in this organization called SuperSibs. The organization sends her something to make her feel special about every month. This is such a great program. I hate to admit it, but I don't find myself doting on Annakate like I used to. Instead of doing her hair in the morning, I am getting Davis dressed or giving him his medication. Instead of reading her bedtime stories, I am helping him with his homework. While Kyle and I do make an effort to devote individualized attention and time to her, the program helps us by surprising her with encouragement. Plus, she feels so important. 
We love living in the country. We have fantastic neighbors (In the country, everyone within a five-mile radius in any direction is your neighbor.) who look out for one another, and the space allows the kids to run and explore. I love the opportunities that country living and nature provide to my children. The wildlife alone creates our own hands-on encyclopedia. Over the course of a week (depending on the season), it is not uncommon to see hawks, owls, vultures, quail, deer, raccoons, stray cats, skunks, opossums, snakes, and coyotes in our yard. Yesterday was no exception. My normal morning routine includes opening my kitchen blinds allowing the natural light to flood in to warn everyone -mostly me- that morning is indeed here. I think I gasped before a smile broke across my face when I saw our neighbor's horse grazing by the trampoline. What a delightful surprise to the morning! No worries. I called my neighbors and the horse was home safely in its fence in no time. I sure hope the horse manages to make it over again sometime. I think my neighbors sure hope it doesn't. Tomorrow, Davis will get a CBC. We should know where his ANC (immune system) is then. The chemo last week should have made it drop, but we don't know how much. His ANC and his overall health will determine how much he can do this weekend. We have never really trick-or-treated in the traditional sense. We usually stop by a few houses that belong to family members. Davis doesn't eat candy, chew gum, or suck mints (We let him; he just doesn't like that type of stuff.), so he doesn't really care to trick-or-treat. I think a great deal of the weekend will be devoted to make-up school work from the two weeks that he missed. We will head down to St. Louis on Monday for chemo. He plans on wearing his Halloween costume, a doctor, to clinic.
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| My kids love Andy Anderson. Andy makes some great balloon creations. Davis asked for a circle, and Annakate asked for a square. They thought that was hilarious. |
Davis has developed mouth sores (very common). He has been pretty fortunate to not have too many until now. I believe that it is the methotrexate that he receives in his port that is causing them, because that was the only new chemo added. Methotrexate causes mouth sores. He has been faithfully using Biotene for months, but it simply isn't enough. He has started using a rubber-finger style tooth cleaner for infants, because even the softest of toothbrushes still cause his mouth to bleed. The doctors will check out the mouth situation on Monday. I hate it that he has mouth sores. I don't want anything to hurt him or impede his ability or desire to eat, but I can't help but think that if this is the worst of it, he is still very blessed.
We continue to pray every day for our son. We still pray against side effects, for Davis' emotional well-being, for the health of the kids in which he comes in contact, for healing and CURE. I can't help but feel that there are many life lessons to be learned from this experience, and I thank God for the blessings - the silver lining in all of this - that we have received and continue to discover. We still pray for courage, strength, and endurance, because sometimes they appear to be in short supply. We know that we still have such a long road ahead. We are so moved by your thoughts and prayers. I can only imagine how families are crushed under the weight of carrying this burden - this battle - alone. We are overwhelmed and grateful for the support we have. Not one day goes by that we don't feel both amazed and unworthy of your relentless thoughts and prayers.
We will keep you posted.
Sunday, October 23, 2011
Trying to Find That Routine Again
10/23/2011: 4:00 PM
Davis still continues to sleep a lot. He just can't find the energy to sustain himself for long periods of time. Provided that his class is well -- there were many sick last week -- he is planning on trying to go to school tomorrow. I am not sure if he will make it a full day; he many not have the energy to complete a whole day. School does help him keep his mind off not feeling well, and he is far more productive at school than he is at home.
I want to take a minute to thank the Oakland school and community. I was able to stop in on Friday for a visit. Some of the teachers and students made Davis a giant poster with well wishes on it. He loves it. It is hanging in his room. The Oakland community also collected nearly 200 new hats for a "Hats Off for Cancer" drive. Davis will be donating them to the Children's Hospital on their behalf.
Hoping and praying for good health and a productive week.
I apologize. I only have a few minutes, so I will try to give my best to give a detailed abbreviated version.
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| another long day of chemo |
I did not go to chemo on Friday. Davis, Kyle, and my mom set out at 5:00 AM for the long day. I stayed home and ran some errands, attended a parent/teacher conference, and spent some quality time with Annakate. To our surprise, Davis weighed 55 pounds! 55! He has lost nearly 25 pounds and weighs less than his seven-year-old sister. The doctors don't seem to be as worried as we are, so I guess that is a good thing. Davis did well without me being there. He sailed through his chemo.When it was time for the Peg shots, Kyle called me and put me on speaker phone, so that I was there to cheer and comfort Davis. Davis took the shots well. He cried, but I think anyone would. They were able to leave the hospital around 4:30, and they made it home between 7:30 and 8:00 PM. A very long day.
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| tent's looking a little crowded |
Annakate and I enjoyed our time together. I ate lunch with her at school, and when I picked her up afterwards, I let her decide what we were going to do. Shopping? Manicures? Go out to supper? Nope. She chose pie baking. We had a blast making a huge mess. She did it all, and I, of course, was her assistant. She really enjoyed making the crust and peeling the apples, and we hurried to get it finished before Davis made it home. It was to be his surprise. I giggle a bit at the irony that Annakate doesn't like apple pie and won't eat any of it. I guess the joy is in the baking. And by the way, it's delicious. I posted some cute pictures below.
The doctors have started taking metabolic panels to keep an eye on Davis's liver function. Many of the different types of chemo can cause potential problems with the liver and kidneys. The CMP test will measure the drug toxicity in his body. Kyle brought home the first report, and there are a great deal of levels that are out of whack. I plan to call the clinic tomorrow just to hear a professional reassure me that this is normal and there is no long-term liver damage going on.
This morning we went to church as a family. It was the first time in a long time. When Davis is sick or his counts are low, one of us stays home (we rotate) with him, and one of us takes Annakate. We are aware that his counts will start to drop because of the recent chemo (usually takes a few days), so we took advantage of the opportunity.
Davis still continues to sleep a lot. He just can't find the energy to sustain himself for long periods of time. Provided that his class is well -- there were many sick last week -- he is planning on trying to go to school tomorrow. I am not sure if he will make it a full day; he many not have the energy to complete a whole day. School does help him keep his mind off not feeling well, and he is far more productive at school than he is at home.
I want to take a minute to thank the Oakland school and community. I was able to stop in on Friday for a visit. Some of the teachers and students made Davis a giant poster with well wishes on it. He loves it. It is hanging in his room. The Oakland community also collected nearly 200 new hats for a "Hats Off for Cancer" drive. Davis will be donating them to the Children's Hospital on their behalf. We continue to feel such love and support, and we are so grateful for it. We appreciate your prayers and positive thoughts, because that is what is getting us through this.
Hoping and praying for good health and a productive week.
We will keep you posted.
Thursday, October 20, 2011
Feels Like Snow Days Around Here
10/20/2011: 9:54 PM
We were released from the hospital a day earlier than scheduled. Davis's ANC was 240 and on the climb. He was given the orders to eat and rest. He was homebound while his counts were building. The goal was to get his ANC over 750 and his platelets over 75 so that he could receive the chemo that he missed last week.
The last two days have felt like snow days. We were all home together for huge chunks of time. Davis couldn't go to school because of his counts, Annakate was dismissed at 10:50 every day because of parent-teacher conferences, and Kyle was in and out on account of the rain. I love it. The kids have built tents, played Wii, completed projects, wrestled, etc. It's been fun - and loud.
One of the highlights of the last couple of days was when Davis's friends, Wade, Gage, and Drew, popped by for a quick visit. They were running around in no time. Davis was able to get the scoop on what he has missed in the last two weeks at school. I love how the boys just pick up where they left off and no matter how pale, thin, or sick Davis is; it doesn't seem to phase them.
Davis is still struggling getting his days and nights straightened out. He goes to bed at 1:00 or 2:00 AM and attempts to sleep in until 9 or 10 AM. I try to wake him up at a decent time but it is near impossible. We send him to bed at a decent time, but he manages to keep busy with a notebook (writing and journaling) and a flashlight. The English teacher loves this, but the mom wants him to sleep. He has draped blankets from his top bunk down around his bottom futon bed. Then, he placed a card table inside of the tented area and draped more blankets over the card table. It is inside the tent within tent that he sleeps. It is a struggle to check on him because of all of the blankets. I tried to lay down in it for awhile- you know, to encourage him to go to sleep, but it was simply too small. My days of sleeping under blanket-covered card tables are long over. I headed back to my bed. I am sure it is a mom thing, but I can rarely sleep when my kids are awake, so I would get up and check on him every twenty minutes or so. Finally at 2:20 AM, he was out.
Annakate is doing quite well in school. We are so proud of her. I was a bit worried because we have pushed a lot of the school/homework/reading responsibilities back on her. We struggle sometimes to keep the school routine of studying for tests and reading that we kept in past grades. It is such a relief to see that she is a very bright girl who has managed to do well despite not receiving the one-on-one attention that we have given to her and her schooling in the past.
Tomorrow, Davis will receive his chemo via his port at 8:30 AM. He will then receive chemo via spinal right before lunch. He is still placed under anesthesia for the spinal taps. Between 4 and 5 PM, he will be given the Peg shots, and he will be allowed to come home. Typically, there is 24 hour wait between the chemo injection via port and the Peg shots because the Pegs can weaken the effect of the methotrexate that is shot into the port. However, they are very confident that the time they are giving between the doses is sufficient. I pray that they are right. I am still a bit nervous. The longer the wait, the better, I think.
I am attaching the lyrics and the link with the hopes that this might bless someone else who is struggling.
Healer
Hillsong's Healer
You hold my every moment
You calm my raging seas
You walk with me through fire
and heal all my disease
I trust in You
I trust in You
I believe You're my healer
I believe You are all I need
I believe You're my portion
I believe You're more than enough for me
Jesus, You're all I need
Nothing is impossible for You
Nothing is impossible
Nothing is impossible for You
You hold my world in Your hands
For me, the last line here says it all.
Again, we thank you all for everything. We appreciate and feel your positive thoughts, love, and prayers.
We will keep you posted.
We were released from the hospital a day earlier than scheduled. Davis's ANC was 240 and on the climb. He was given the orders to eat and rest. He was homebound while his counts were building. The goal was to get his ANC over 750 and his platelets over 75 so that he could receive the chemo that he missed last week.
The last two days have felt like snow days. We were all home together for huge chunks of time. Davis couldn't go to school because of his counts, Annakate was dismissed at 10:50 every day because of parent-teacher conferences, and Kyle was in and out on account of the rain. I love it. The kids have built tents, played Wii, completed projects, wrestled, etc. It's been fun - and loud.
One of the highlights of the last couple of days was when Davis's friends, Wade, Gage, and Drew, popped by for a quick visit. They were running around in no time. Davis was able to get the scoop on what he has missed in the last two weeks at school. I love how the boys just pick up where they left off and no matter how pale, thin, or sick Davis is; it doesn't seem to phase them.
Davis is still struggling getting his days and nights straightened out. He goes to bed at 1:00 or 2:00 AM and attempts to sleep in until 9 or 10 AM. I try to wake him up at a decent time but it is near impossible. We send him to bed at a decent time, but he manages to keep busy with a notebook (writing and journaling) and a flashlight. The English teacher loves this, but the mom wants him to sleep. He has draped blankets from his top bunk down around his bottom futon bed. Then, he placed a card table inside of the tented area and draped more blankets over the card table. It is inside the tent within tent that he sleeps. It is a struggle to check on him because of all of the blankets. I tried to lay down in it for awhile- you know, to encourage him to go to sleep, but it was simply too small. My days of sleeping under blanket-covered card tables are long over. I headed back to my bed. I am sure it is a mom thing, but I can rarely sleep when my kids are awake, so I would get up and check on him every twenty minutes or so. Finally at 2:20 AM, he was out.
Annakate is doing quite well in school. We are so proud of her. I was a bit worried because we have pushed a lot of the school/homework/reading responsibilities back on her. We struggle sometimes to keep the school routine of studying for tests and reading that we kept in past grades. It is such a relief to see that she is a very bright girl who has managed to do well despite not receiving the one-on-one attention that we have given to her and her schooling in the past. Davis has been craving spicy foods as of late. The docs and nurses say that this is pretty normal. Chemo changes and kills the taste buds, and people tend to crave spicy food because of the taste. Davis has eaten a lot of Thai, Mexican, and chili the last couple of days. We don't mind at all. We are thankful he is eating.
Davis went to Sarah Bush and had a CBC (blood panel) and a CMP (checks metabolism and nutrients in his blood). His blood was a bit problematic. At first, it was runny and then it was clotty. The lab tech finally was able to get enough after a few finger pricks. St. Louis called us a short while later with some awesome news. Davis's counts are making a quick comeback. His white blood cells were up from .8 to 2.8 (healthy kids range between 5 and 10). His hemoglobin was holding at 10.3. His platelets were up from 64 to 160 (healthy kids range between 150-450), and his ANC was 1148! His ANC was 240 on Tuesday and was 0 one week ago (healthy kids are greater than 1500). Even though his counts will take a hit from the chemo tomorrow, he is cleared to go to school on Monday as long as there are no sick children in his class.
Tomorrow, Davis will receive his chemo via his port at 8:30 AM. He will then receive chemo via spinal right before lunch. He is still placed under anesthesia for the spinal taps. Between 4 and 5 PM, he will be given the Peg shots, and he will be allowed to come home. Typically, there is 24 hour wait between the chemo injection via port and the Peg shots because the Pegs can weaken the effect of the methotrexate that is shot into the port. However, they are very confident that the time they are giving between the doses is sufficient. I pray that they are right. I am still a bit nervous. The longer the wait, the better, I think.
We still continue the same fervent prayers that we have prayed from the get-go. We pray that Davis is spared from short term and long term side effects. We also pray for his overall health and the health of his classmates, so that he may attend school for as long as possible (and we want his classmates to stay healthy too. It isn't fun being sick.) Most importantly, we pray for his overll well-being, healing, and CURE.
I know I have often shared the fact that I draw strength and comfort from music. A few weeks ago, we sang a worship song at church that we sing every so often. It is pretty popular; it is called, "Healer" by Hillsong. Honestly, I had forgotten about this song until we sang it the other night. I'm not sure what it was about that night, the song, the heaviness of my heart, but it was like the song was written for me. It was as though it was crafted and existed for me when I was ready to need it. Over the last few weeks, that song has been swimming around in the back of my mind. When Davis was in the hospital and the doctors couldn't get the fever to break, when he would cry in my arms because the homesickness was too much for him to bear, when I was tired and the weariness began to deplete my patience and faith, I would sing, hum, whisper this song. I guess every person who has been on this road finds their escape - their way to cope. I think God provides me the music - the songs - because he knows best how to reach me. I am grateful.
I am attaching the lyrics and the link with the hopes that this might bless someone else who is struggling.
Healer
Hillsong's Healer
You hold my every moment
You calm my raging seas
You walk with me through fire
and heal all my disease
I trust in You
I trust in You
I believe You're my healer
I believe You are all I need
I believe You're my portion
I believe You're more than enough for me
Jesus, You're all I need
Nothing is impossible for You
Nothing is impossible
Nothing is impossible for You
You hold my world in Your hands
For me, the last line here says it all.
Again, we thank you all for everything. We appreciate and feel your positive thoughts, love, and prayers.
We will keep you posted.
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| Hospital Visitors: Grandpa and Grandma Fanello |
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| Hospital Visitor: Uncle Randy Coffey |
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| Hospital Visitors: Grandpa and Grandma Coffey |
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| This was my view for nearly 15 hours every day while Davis was in the hospital |
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| The long-awaited smile. Getting ready to leave the hospital. |
Tuesday, October 18, 2011
Homeward Bound . . . Maybe
10/18/2011: 10:15 AM
Davis is feeling so much better. He has conquered nearly everything on his checklist to be released from the hospital. His ANC (immune system) was in the 60s yesterday, and today it is over 200! No fever for over 48 hours now. The nurses seem extremely confident that we will be released today despite Davis not having an ANC over 500. They are under the impression that Davis can count build at home. We are still waiting to hear from the doctors. They make the call.
The biggest stress yesterday was finding a hotel in the St. Louis area for Wednesday evening. Davis has to be back at the hospital at 6:45 AM on Thursday for a spinal, so it makes sense to spend the night before. I am not begrudging the Cardinals of their success by any means, but our timing and their World Series timing collided. After some frustration, I left the task up to Kyle, and he found us a room. Thanks, honey.
Davis managed to do a bit of homework and eat some yesterday evening. He has his days and nights mixed up too. He was awake from 5:00 PM to nearly 1:00 AM. He watched a couple of movies and tinkered around during that time. Of course, he is asleep now. He is doing a better job at taking his medication too. It is still a drawn-out process.
Wait. . . Talking to the nurse . . .We are going home! Today! The doctors have moved his LP (spinal tap) to Friday because they are pretty sure his ANC won't be over the needed 750. With the chemo starting on Friday, Davis will have to be admitted again on Friday evening (or Saturday morning) to receive Day 2 of chemo - the dreaded Peg shots. Since the clinic will be closed on Saturday, he will have to receive them in-patient. Because of Davis's anxiety, the doctors have given us the option to stay in a hotel on Friday evening. Davis would come in on Saturday morning and be admitted for the day. Ahhhhhh. I can't wait to sleep in my own bed and see Annakate. I am not looking forward to the three hour trip home and the road construction, and from what I have heard, it is freezing outside. When we were admitted last week, it was nearly 80 degrees. Needless to say, I am a bit underdressed for the weather. I am still in flip-flops. Poor planning, I guess.
Nothing else going on. We will hopefully be discharged sometime this afternoon. Past practice has usually been between 3:00 and 5:00 PM.
Thanks for all of your prayers and positive thoughts. You are fantastic at rallying around us in our time of need.
We will keep you posted.
Davis is feeling so much better. He has conquered nearly everything on his checklist to be released from the hospital. His ANC (immune system) was in the 60s yesterday, and today it is over 200! No fever for over 48 hours now. The nurses seem extremely confident that we will be released today despite Davis not having an ANC over 500. They are under the impression that Davis can count build at home. We are still waiting to hear from the doctors. They make the call.
The biggest stress yesterday was finding a hotel in the St. Louis area for Wednesday evening. Davis has to be back at the hospital at 6:45 AM on Thursday for a spinal, so it makes sense to spend the night before. I am not begrudging the Cardinals of their success by any means, but our timing and their World Series timing collided. After some frustration, I left the task up to Kyle, and he found us a room. Thanks, honey.
Davis managed to do a bit of homework and eat some yesterday evening. He has his days and nights mixed up too. He was awake from 5:00 PM to nearly 1:00 AM. He watched a couple of movies and tinkered around during that time. Of course, he is asleep now. He is doing a better job at taking his medication too. It is still a drawn-out process.
Wait. . . Talking to the nurse . . .We are going home! Today! The doctors have moved his LP (spinal tap) to Friday because they are pretty sure his ANC won't be over the needed 750. With the chemo starting on Friday, Davis will have to be admitted again on Friday evening (or Saturday morning) to receive Day 2 of chemo - the dreaded Peg shots. Since the clinic will be closed on Saturday, he will have to receive them in-patient. Because of Davis's anxiety, the doctors have given us the option to stay in a hotel on Friday evening. Davis would come in on Saturday morning and be admitted for the day. Ahhhhhh. I can't wait to sleep in my own bed and see Annakate. I am not looking forward to the three hour trip home and the road construction, and from what I have heard, it is freezing outside. When we were admitted last week, it was nearly 80 degrees. Needless to say, I am a bit underdressed for the weather. I am still in flip-flops. Poor planning, I guess.
Nothing else going on. We will hopefully be discharged sometime this afternoon. Past practice has usually been between 3:00 and 5:00 PM.
Thanks for all of your prayers and positive thoughts. You are fantastic at rallying around us in our time of need.
We will keep you posted.
Monday, October 17, 2011
His Counts Aren't in a Hurry
10/17/2011: 11:25 AM
A lot of the same here. Yesterday, we had a few visitors, and that helped to break up the monotony. Davis still sleeps a great deal of the time.
The doctor stopped in shortly after Davis awoke to take some morning medication. As she was talking to us, he became very quiet and reserved. I think it dawned on him that he wasn't going home today, and there is a good chance that he will be here on Tuesday as well.
What the doctor had to share was promising. None of the cultures that were taken grew any bacteria or fungus. That rules out some of the most serious infection types. They have adjusted the super-antibiotic and he is now getting the proper levels. His metabolism was processing it too quickly initially. His counts are beginning to climb. His white blood cells are up to 1.3 from .8, and his ANC is up to 65 from 30 something yesterday. His monocyte counts (monocytes are the little soldiers in your blood) are up to 35. This is a indicator that an ANC jump is coming. The doctor seemed pretty sure that Davis would meet the requirements to start chemo on Thursday. That means that it is expected that his ANC will be over 750 and his platelets will be over 75. This is comforting since his chemo was postponed last week.
Davis did develop some blurred vision, dizziness, and a headache last night around midnight. The doctor on call was unsure as to why he developed these symptoms. The best guess is that the Benadryl given to pre-treat him before his super-antibiotic hadn't kicked in, and the combination of the two antibiotics running in his system at the same time was causing a bit of trouble, but that is a bit of a long shot. The important thing is that when he woke up this morning, the symptoms were gone.
From the medical point of view, the goal for Davis today is to count build and eat and drink. It breaks my heart to think that a goal for a ten-year-old is to eat and drink. Just something I never thought of before cancer. From the mom point of view, the goal for Davis is to work on some homework. His teachers are so kind and understanding; they are not requesting work at all. I just think if I can get him to do some, it may relieve some anxiety later on this week. Essentially, he is going to miss two weeks of school and maybe more. Anyone who has ever had to make up weeks of work and keep up with the new daily work knows that it can be overwhelming.
I wanted to let all of you know of a fundraiser being done on our behalf. Mandy Hanner, a friend and fellow teacher at Oakland High School, has organized a t-shirt sale. If you are interested in purchasing a shirt, you can print the attached order form, complete it, and mail it to her. The t-shirts are gray with orange writing and say "Team Davis" overlayed on an orange cancer ribbon. The reason for the orange is that it is the color for Leukemia awareness. It also happens to be one of Davis's favorite colors and one of Oakland's school colors. So, I am learning to love orange. If you need more information or have questions, please email me at abcoffey77@gmail.com, and I will be sure to help.
T-shirt order form: Team Davis Shirt Order Form
We are so fortunate that Davis is making a quick recovery. Although the last few days have been draining and scary, the doctors assure us that Davis is responding to treatment appropriately. And while the stay has been longer than we have liked, we know that it could have been weeks.
We so love all of your prayers and positive thoughts. We have the best support system imaginable. We are truly grateful. We are praying that this is the last infection Davis encounters and that his treatment resumes. We never forget to pray for the requests that have become routine: no side effects, healing, and CURE. We want nothing more than to have this illness behind us. May God bless all of you who walking this journey with us.
We will keep you posted.
A lot of the same here. Yesterday, we had a few visitors, and that helped to break up the monotony. Davis still sleeps a great deal of the time.
The doctor stopped in shortly after Davis awoke to take some morning medication. As she was talking to us, he became very quiet and reserved. I think it dawned on him that he wasn't going home today, and there is a good chance that he will be here on Tuesday as well.
What the doctor had to share was promising. None of the cultures that were taken grew any bacteria or fungus. That rules out some of the most serious infection types. They have adjusted the super-antibiotic and he is now getting the proper levels. His metabolism was processing it too quickly initially. His counts are beginning to climb. His white blood cells are up to 1.3 from .8, and his ANC is up to 65 from 30 something yesterday. His monocyte counts (monocytes are the little soldiers in your blood) are up to 35. This is a indicator that an ANC jump is coming. The doctor seemed pretty sure that Davis would meet the requirements to start chemo on Thursday. That means that it is expected that his ANC will be over 750 and his platelets will be over 75. This is comforting since his chemo was postponed last week.
Davis did develop some blurred vision, dizziness, and a headache last night around midnight. The doctor on call was unsure as to why he developed these symptoms. The best guess is that the Benadryl given to pre-treat him before his super-antibiotic hadn't kicked in, and the combination of the two antibiotics running in his system at the same time was causing a bit of trouble, but that is a bit of a long shot. The important thing is that when he woke up this morning, the symptoms were gone.
From the medical point of view, the goal for Davis today is to count build and eat and drink. It breaks my heart to think that a goal for a ten-year-old is to eat and drink. Just something I never thought of before cancer. From the mom point of view, the goal for Davis is to work on some homework. His teachers are so kind and understanding; they are not requesting work at all. I just think if I can get him to do some, it may relieve some anxiety later on this week. Essentially, he is going to miss two weeks of school and maybe more. Anyone who has ever had to make up weeks of work and keep up with the new daily work knows that it can be overwhelming.
I wanted to let all of you know of a fundraiser being done on our behalf. Mandy Hanner, a friend and fellow teacher at Oakland High School, has organized a t-shirt sale. If you are interested in purchasing a shirt, you can print the attached order form, complete it, and mail it to her. The t-shirts are gray with orange writing and say "Team Davis" overlayed on an orange cancer ribbon. The reason for the orange is that it is the color for Leukemia awareness. It also happens to be one of Davis's favorite colors and one of Oakland's school colors. So, I am learning to love orange. If you need more information or have questions, please email me at abcoffey77@gmail.com, and I will be sure to help.
T-shirt order form: Team Davis Shirt Order Form
We are so fortunate that Davis is making a quick recovery. Although the last few days have been draining and scary, the doctors assure us that Davis is responding to treatment appropriately. And while the stay has been longer than we have liked, we know that it could have been weeks.
We so love all of your prayers and positive thoughts. We have the best support system imaginable. We are truly grateful. We are praying that this is the last infection Davis encounters and that his treatment resumes. We never forget to pray for the requests that have become routine: no side effects, healing, and CURE. We want nothing more than to have this illness behind us. May God bless all of you who walking this journey with us.
We will keep you posted.
Sunday, October 16, 2011
Slow Recovery
10/16/2011: 11:10 AM
Other than that, nothing else going on here. We just sit around. Davis does play on the computer some, but he won't watch TV. He just sleeps.
Thanks for all of your kind thoughts and much-needed prayers. Although we know we are never alone, it does get lonely here from time to time. Davis misses his home and his routine. But we know that we are where we need to be. We are truly blessed to have such good family and friends who care for us so deeply.
We will keep you posted.
 |
| Red Man Syndrome |
Davis has made some marked improvements over that last 24 hours. He has been without fever for nearly 12 hours, and his counts are beginning to trend upwards. His ANC was 12 yesterday and is 32 today. It will need to be in the triple digits before we can head home.
The antibiotic used to treat staff infections caused the allergic reaction called Red Man Syndrome. Since he needs the antibiotic, he is pretreated with a counter medication before the antibiotic is administered. The antibiotic is then given over two times the normal time span to slow the reaction down. It seems to be working for the most part. He still has some redness and itching, but it does not appear to be as severe.
 |
| Scary, huh? |
Davis did manage to eat yesterday. Actually, he ate more yesterday than he has in one entire week. We have had no luck today. He has slept a great deal of the day away. He still sleeps 15 or more hours a day. This slows down normal daily functions: eating, drinking, taking medication, walking. However, sleep still trumps those activities because it works as a coping mechanism while the body is fighting the infection.
Speaking of infection . . . we still don't have a confirmed diagnosis of what type of infection it is. All the docs seem to know is that it is responding to the high powered antibiotics, so it is probably a bacterial infection of some type. They can't identify where it is in the body either.
The doctors won't give us a timeline for being discharged. It depends on his counts. We are set for chemo on Thursday and Friday, and one doctor thought that we would be able to go home and make it back for Thursday chemo. She quickly followed with, "No promises, though." I am still optimistic.
Other than that, nothing else going on here. We just sit around. Davis does play on the computer some, but he won't watch TV. He just sleeps.
Thanks for all of your kind thoughts and much-needed prayers. Although we know we are never alone, it does get lonely here from time to time. Davis misses his home and his routine. But we know that we are where we need to be. We are truly blessed to have such good family and friends who care for us so deeply.
We will keep you posted.
Saturday, October 15, 2011
Changes, Improvement, and Hanging Out
10/15/2011: 12:51 PM
Davis spiked a fever of 101.8 last night. This is considered a significant fever because he has been on a broad spectrum antibiotic for days now. The doctor now believes that Davis has infection somewhere in his body, and that the ear infection is no longer the source of infection. While nothing has been confirmed or discovered, it is likely that the infection is a line infection (infection in his port), bacterial infection in his blood, fungal infection, strep or staff infection. That narrows it down, doesn't it. The cultures are only 30% accurate, so we may never know. The important thing is to kill the fever and have his counts recover. This means the infection, whatever it is, is gone.
The super-antibiotic that Davis has been placed on to treat the infection causes something called Red Man Syndrome. 95% of children experience this side effect. It causes his head to turn bright red and itch. If he develops this side effect, he will be given something to counter it.
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| cousin jordan stopped by for a visit |
Disclaimer: I can't remember what I posted yesterday. The last few days have been a blur. Sorry for any repeat of information.
Yesterday started out pretty rough. Davis was weepy and defiant. The docs thought it would be best if Davis was given something to treat the anxiety. He was sedated and slept for a good while. He was a new man when he awoke. He was cooperative and even went for a walk and ate a handful of popcorn. What a difference it has been.
 |
| a lot of sleeping going on |
Davis's overall health has improved steadily. He ate a bit last night, and has even eaten some today. He is also drinking. He is still on a nutrient fluid drip, so I think between the both, he is staying well hydrated. He is even sleeping less, which is a sign that the infection has decreased. His counts haven't moved a bunch. His ANC (immune system) is up to 12 from 0. His white count is still critical at 0.4, and his hemoglobin dropped. He just finished his blood transfusion.
Davis spiked a fever of 101.8 last night. This is considered a significant fever because he has been on a broad spectrum antibiotic for days now. The doctor now believes that Davis has infection somewhere in his body, and that the ear infection is no longer the source of infection. While nothing has been confirmed or discovered, it is likely that the infection is a line infection (infection in his port), bacterial infection in his blood, fungal infection, strep or staff infection. That narrows it down, doesn't it. The cultures are only 30% accurate, so we may never know. The important thing is to kill the fever and have his counts recover. This means the infection, whatever it is, is gone.
The super-antibiotic that Davis has been placed on to treat the infection causes something called Red Man Syndrome. 95% of children experience this side effect. It causes his head to turn bright red and itch. If he develops this side effect, he will be given something to counter it.
 |
| comic relief arrived friday evening |
We will be here for a couple more days minimum. Davis is well aware of it and has adjusted to it. He aleady has his chemo scheduled for next THursday and Friday, so I think the doctors think that his counts will be strong enough to continue for treatment. If his platelets and ANC aren't where they are supposed to be, it will cancelled again this week and scheduled for next week.
We appreciate all of your thoughts and prayers that you are sending our way. Davis is doing so much better!! Keep them coming; they're working! We no longer take for granted how truly blessed we are.
We will keep you posted.
Friday, October 14, 2011
Sleep-Filled Days and Sleepless Nights
10/14/11: 9:21 AM
For the most part, yesterday was uneventful. Davis slept most the day. The doctors would check in periodically and update us on what they knew. They believe the infection is the beginning of an ear infection. His right ear is red and there is a bit of fluid there, but no real infection has started. They are still growing cultures as well.
In order for Davis to go home, he can not be symptomatic nor can his counts decrease. Neither of those two things are happening right now. Davis ran fever up until early this morning. We have to stay in the hospital for 24 hours after a fever breaks. We are hoping that today brings no more fevers. Davis' ANC was 0 when he was admitted, 43 yesterday, and 0 again today. His red blood cells were over 8 yesterday, and today they are 7.4. If he struggles with a headache today, he will receive a blood transfusion. In order to leave, Davis' ANC has to jump into the triple digits and continue to increase with no fluctuation. We are obviously not there yet, and there are no plans for us to leave. We will have to stay because his body can't fight an infection without help.
Davis is insanely homesick. He cried for two hours (almost until midnight) because he wanted to go home. He hates it here, and he acts out when he feels he has no control. Last night, he negotiated and argued with the floor doc about taking his meds. He kept saying to the doc, "I will take my meds if you let me get out of here." The doctor would respond, "You can not leave yet, but you are not going to get to leave if we can't trust you to take your medication." And then Davis would spout, "Well then, I am never leaving, because I am not taking the medicine." That went on forever. Our typical approach, the you-are-going-to-do-this-because-we-say-so, doesn't work anymore. Some days it seems like nothing does. He kept telling me over and over, "Mom, you have to get me out of here. Please, Mom. I am going to run out of here and go home and go to school tomorrow." Heart-breaking. Davis did take all but one medication before they gave him some medication to help with nausea. The bonus is that the nausea medication also sedates him. He was so worked up; sleep was such a blessing.
Davis continues to struggle with severe headaches, dizziness, and nausea. He rarely gets out of bed. It feels better to lie flat. He complains of headache when he sits up. He ate nothing yesterday, but did manage to drink 5 or so ounces of water. The docs are not worried about the non-existent appetite, but he will have to be eating and drinking to be able to leave.
So if the cultures determine nothing, we are sticking with the ear infection diagnosis. I am not truly convinced that that is what it is, but I am not a doctor. I really have underestimated the importance of an immune system. It reminds me of jumping out of an airplane without a parachute. It is always going to turn out badly if you don't have something helping you out. In the jumper's case, a parachute. In Davis's case, an immune system - or doctors, hospitals, and IV meds - to help fight infection.
The doctors determine a goal everyday for Davis to accomplish. Today's goal is to drink and use the bathroom on his own. Oh the things we take for granted with our healthy children.
We finally have our own room. I was able to sleep on a couch last night. It sure beat the chairs that I have been sleeping in the last couple of nights. Thankfully, we have not seen many of the families with whom we have built friendships. Sadly, the floor is full of new faces. There are a couple of precious, little ones wobbling about. They are maybe 18 months to 2 years at best. Yesterday, the music therapy crew brought instruments, and there was a little dance party in the hall. Those babies danced and beat drums for nearly an hour. It was refreshing and amusing. I don't know their names or their stories, but my heart hurts that they are here.
We want to thank all those who have texted or called and sent words of encouragement and prayers our way. You are far too thoughtful. Our most immediate prayers are for this illness to be resolved, for Davis to have peace and begin eating and drinking consistently again. And of course, we always pray against side effects and for his forever healing.
Looking forward to and hoping for a peaceful day.
We will keep you posted.
For the most part, yesterday was uneventful. Davis slept most the day. The doctors would check in periodically and update us on what they knew. They believe the infection is the beginning of an ear infection. His right ear is red and there is a bit of fluid there, but no real infection has started. They are still growing cultures as well.
In order for Davis to go home, he can not be symptomatic nor can his counts decrease. Neither of those two things are happening right now. Davis ran fever up until early this morning. We have to stay in the hospital for 24 hours after a fever breaks. We are hoping that today brings no more fevers. Davis' ANC was 0 when he was admitted, 43 yesterday, and 0 again today. His red blood cells were over 8 yesterday, and today they are 7.4. If he struggles with a headache today, he will receive a blood transfusion. In order to leave, Davis' ANC has to jump into the triple digits and continue to increase with no fluctuation. We are obviously not there yet, and there are no plans for us to leave. We will have to stay because his body can't fight an infection without help.
Davis is insanely homesick. He cried for two hours (almost until midnight) because he wanted to go home. He hates it here, and he acts out when he feels he has no control. Last night, he negotiated and argued with the floor doc about taking his meds. He kept saying to the doc, "I will take my meds if you let me get out of here." The doctor would respond, "You can not leave yet, but you are not going to get to leave if we can't trust you to take your medication." And then Davis would spout, "Well then, I am never leaving, because I am not taking the medicine." That went on forever. Our typical approach, the you-are-going-to-do-this-because-we-say-so, doesn't work anymore. Some days it seems like nothing does. He kept telling me over and over, "Mom, you have to get me out of here. Please, Mom. I am going to run out of here and go home and go to school tomorrow." Heart-breaking. Davis did take all but one medication before they gave him some medication to help with nausea. The bonus is that the nausea medication also sedates him. He was so worked up; sleep was such a blessing.
Davis continues to struggle with severe headaches, dizziness, and nausea. He rarely gets out of bed. It feels better to lie flat. He complains of headache when he sits up. He ate nothing yesterday, but did manage to drink 5 or so ounces of water. The docs are not worried about the non-existent appetite, but he will have to be eating and drinking to be able to leave.
So if the cultures determine nothing, we are sticking with the ear infection diagnosis. I am not truly convinced that that is what it is, but I am not a doctor. I really have underestimated the importance of an immune system. It reminds me of jumping out of an airplane without a parachute. It is always going to turn out badly if you don't have something helping you out. In the jumper's case, a parachute. In Davis's case, an immune system - or doctors, hospitals, and IV meds - to help fight infection.
The doctors determine a goal everyday for Davis to accomplish. Today's goal is to drink and use the bathroom on his own. Oh the things we take for granted with our healthy children.
We finally have our own room. I was able to sleep on a couch last night. It sure beat the chairs that I have been sleeping in the last couple of nights. Thankfully, we have not seen many of the families with whom we have built friendships. Sadly, the floor is full of new faces. There are a couple of precious, little ones wobbling about. They are maybe 18 months to 2 years at best. Yesterday, the music therapy crew brought instruments, and there was a little dance party in the hall. Those babies danced and beat drums for nearly an hour. It was refreshing and amusing. I don't know their names or their stories, but my heart hurts that they are here.
We want to thank all those who have texted or called and sent words of encouragement and prayers our way. You are far too thoughtful. Our most immediate prayers are for this illness to be resolved, for Davis to have peace and begin eating and drinking consistently again. And of course, we always pray against side effects and for his forever healing.
Looking forward to and hoping for a peaceful day.
We will keep you posted.
Thursday, October 13, 2011
Short-Lived Trip Home
10/13/2011: 9:59 AM
At around 7:45 PM last night, Davis spiked a fever of 101.3. He convinced me that it was because he had taken a shower, so I repeated the reading 15 minutes later. 101.7. Since he is neutropenic (low counts, ANC below 500) and has fever, St. Louis had to be notified immediately. We were advised to go to the local ER and wait for transfer.
I think we arrived to the hospital at about 8:30 PM. Sarah Bush was so kind to us. Our nurse and ER doctor were fantastic. Davis' port was accessed and blood was drawn for cultures. He was given a bolus of fluids. They later did a peripheral draw from his arm to test against his port draw. The idea is that if his port blood draw is positive for infection and his arm draw is negative, it will point the doctors to a compromised port or port infection. After the draw, an IV antibiotic was started.
The ICU transport team from Children's arrived a bit after midnight. After some paperwork and a quick examination, we were loaded into a hulk of an ambulance and driven to St. Louis. For safety reasons, I was not allowed to ride in the back with Davis, but there was an opening between the cab and the back that allowed me to see what was going on. The ride was pretty uneventful. Davis slept the entire way. He didn't wake up for any of the experience.
We arrived on the 9th floor a little after 3 AM. There was a steady stream of visitors -vitals techs, nurses, doctors- when we arrived. Another blood draw was done to test his blood for a fungal infection. A bit after 4 AM, it was lights out. They repeated the IV antibiotics this morning, and Davis was given another bag of nutrients with potassium because his potassium count had dropped. No word on the need for blood or platelet transfusions yet.
A quick briefing this morning let us know that Davis will stay here in the hospital until his fever has been gone for 24 hours and until his counts start to recover. The doctors are hoping to have more information as some of the cultures start revealing information. They will be making rounds soon.
Davis is sleeping peacefully. He has only been awake for about 8 hours of the last 24. Yesterday, he ate a cheese stick and two baked Lays potato chips. That's it.
We appreciate your prayers. We are praying that whatever this is, it is minor and Davis will be well soon. We thank you in advance for doing the same.
I will keep you posted.
At around 7:45 PM last night, Davis spiked a fever of 101.3. He convinced me that it was because he had taken a shower, so I repeated the reading 15 minutes later. 101.7. Since he is neutropenic (low counts, ANC below 500) and has fever, St. Louis had to be notified immediately. We were advised to go to the local ER and wait for transfer.
I think we arrived to the hospital at about 8:30 PM. Sarah Bush was so kind to us. Our nurse and ER doctor were fantastic. Davis' port was accessed and blood was drawn for cultures. He was given a bolus of fluids. They later did a peripheral draw from his arm to test against his port draw. The idea is that if his port blood draw is positive for infection and his arm draw is negative, it will point the doctors to a compromised port or port infection. After the draw, an IV antibiotic was started.
The ICU transport team from Children's arrived a bit after midnight. After some paperwork and a quick examination, we were loaded into a hulk of an ambulance and driven to St. Louis. For safety reasons, I was not allowed to ride in the back with Davis, but there was an opening between the cab and the back that allowed me to see what was going on. The ride was pretty uneventful. Davis slept the entire way. He didn't wake up for any of the experience.
We arrived on the 9th floor a little after 3 AM. There was a steady stream of visitors -vitals techs, nurses, doctors- when we arrived. Another blood draw was done to test his blood for a fungal infection. A bit after 4 AM, it was lights out. They repeated the IV antibiotics this morning, and Davis was given another bag of nutrients with potassium because his potassium count had dropped. No word on the need for blood or platelet transfusions yet.
A quick briefing this morning let us know that Davis will stay here in the hospital until his fever has been gone for 24 hours and until his counts start to recover. The doctors are hoping to have more information as some of the cultures start revealing information. They will be making rounds soon.
Davis is sleeping peacefully. He has only been awake for about 8 hours of the last 24. Yesterday, he ate a cheese stick and two baked Lays potato chips. That's it.
We appreciate your prayers. We are praying that whatever this is, it is minor and Davis will be well soon. We thank you in advance for doing the same.
I will keep you posted.
Wednesday, October 12, 2011
And Then There Were Lows
10/12/2011: 6:44 PM
The last couple of days have been a blur. Davis developed a migraine on Monday that intensified on Tuesday. He was experiencing nausea and dizziness. He explained the feeling as non-stop car sickness. He didn't have much of a fever, and his chemo on Friday wasn't difficult or sickening by any means, so I called the doctor. The doctors (a couple doctors/nurses discuss it and make a decision) decided that Davis needed to be admitted for pain control and observation.
Davis and I left Tuesday evening and arrived in St. Louis around 7 P.M. We have to enter through the ER because the hospital is closed after regular business hours. We were given an isolation room (a courtesy and necessity for immuno-suppressed children).
There was a bit of trouble when Davis' port was accessed. The nurse was unable to get a blood return (drawing blood back into the IV tube to make sure that blood can be pulled out and medication can go into the vein). Another nurse tried unsuccessfully. There was some brief talk about a defective port and/or a clotted port. The IV therapy team was called in. After a long wait and a brief visit from the IV therapy team, Davis' port access was stabilized and working. The nurse pulled blood for cultures and CBC and a bag of fluids was started.
Hours passed. Davis and I watched TV to numb our minds and drown out the cries and screams of babies and children in other rooms down the hall. Not much on in the wee morning hours. Did you know that giant jellyfish are destroying the fish market and swarming the beaches of Japan? Did you know that sharks are pulled onto boats and their fins are hacked off, and then they are thrown back into the ocean to drown? Yep. That's what we learned. Disgusting, huh.
We received some partial results a little after midnight, but his electrolytes had clotted so more blood had to be drawn for another test. Davis was agitated and adamant that he was not going to 9th floor, and after hours of crying, it was decided it was best that he stay in the ER until a definitive decision was needing to be made.
Test results revealed that Davis was dehydrated - nutrient depleted. This is most assuredly a result of his refusal to eat and drink enough to sustain normal function. He had lost a pound as well. 58 pounds now. His counts were low. His white blood cell count was .2 (healthy kids between 5-10), and his ANC (absolute neutraphil count - the immune system. Healthy kids are over 1500) was 0. Zero! We are so fortunate. Many cancer kids experience this, but this is our first zero ANC and we are three months into treatment. Because of his low ANC and his lack of good health, Davis is homebound until he feels better and his counts improve. He also had a low calcium reading, so we are going to supplement his diet (if that is what you call it) with Tums or calcium chews.
We were finally released from the ER at 3:00 AM. We headed to a hotel. Sleep was well overdue. We made it home around 4 PM this evening. Davis slept most of the way home. It was one of the few times that I actually enjoyed the drive. The rain was peacefully drizzling down and the colors on the trees seemed abnormally vibrant. So calm, so serene.
His chemo scheduled for Thursday and Friday has been postponed a week. He doesn't have the counts to support chemo as of now. He will go to Sarah Bush tomorrow to have another CBC draw. This will see if his counts have improved. That is the goal. If his hemoglobin or platelets have dropped, we will make another trip down to St. Louis tomorrow for transfusions. If he still has this migraine and isn't eating or drinking, we will be heading back as well.
There's no place like home. We were gone for about 24 hours, but it has felt like days. Annakate greeted us with whining. It didn't take me long to see her runny nose. I grabbed the thermometer. Yep. a low-grade fever. She's sick. It looks like a cold or something along that line. Davis and Annakate have been quarantined to separate sections of the house, and I am dividing my time and attention between the two. With Davis' immune system being non-existent, it is vital that they stay away from one another.
My poor babies. You don't think about health much until you are not healthy. I pray that my children feel better soon. It is of utmost importance that Davis starts eating and drinking. We continue to pray against all of the side effects and for complete healing, but getting him to a healthier state and getting him back to school is our goal this week. Davis does so much better when he has routine in his life.
Thanks for your support. We appreciate all of the cards, texts, calls, and emails that you are sending our way. Very thoughtful. You never cease to touch our hearts with your kindness.
We will keep you posted.
The last couple of days have been a blur. Davis developed a migraine on Monday that intensified on Tuesday. He was experiencing nausea and dizziness. He explained the feeling as non-stop car sickness. He didn't have much of a fever, and his chemo on Friday wasn't difficult or sickening by any means, so I called the doctor. The doctors (a couple doctors/nurses discuss it and make a decision) decided that Davis needed to be admitted for pain control and observation.
Davis and I left Tuesday evening and arrived in St. Louis around 7 P.M. We have to enter through the ER because the hospital is closed after regular business hours. We were given an isolation room (a courtesy and necessity for immuno-suppressed children).
There was a bit of trouble when Davis' port was accessed. The nurse was unable to get a blood return (drawing blood back into the IV tube to make sure that blood can be pulled out and medication can go into the vein). Another nurse tried unsuccessfully. There was some brief talk about a defective port and/or a clotted port. The IV therapy team was called in. After a long wait and a brief visit from the IV therapy team, Davis' port access was stabilized and working. The nurse pulled blood for cultures and CBC and a bag of fluids was started.
Hours passed. Davis and I watched TV to numb our minds and drown out the cries and screams of babies and children in other rooms down the hall. Not much on in the wee morning hours. Did you know that giant jellyfish are destroying the fish market and swarming the beaches of Japan? Did you know that sharks are pulled onto boats and their fins are hacked off, and then they are thrown back into the ocean to drown? Yep. That's what we learned. Disgusting, huh.
We received some partial results a little after midnight, but his electrolytes had clotted so more blood had to be drawn for another test. Davis was agitated and adamant that he was not going to 9th floor, and after hours of crying, it was decided it was best that he stay in the ER until a definitive decision was needing to be made.
Test results revealed that Davis was dehydrated - nutrient depleted. This is most assuredly a result of his refusal to eat and drink enough to sustain normal function. He had lost a pound as well. 58 pounds now. His counts were low. His white blood cell count was .2 (healthy kids between 5-10), and his ANC (absolute neutraphil count - the immune system. Healthy kids are over 1500) was 0. Zero! We are so fortunate. Many cancer kids experience this, but this is our first zero ANC and we are three months into treatment. Because of his low ANC and his lack of good health, Davis is homebound until he feels better and his counts improve. He also had a low calcium reading, so we are going to supplement his diet (if that is what you call it) with Tums or calcium chews.
We were finally released from the ER at 3:00 AM. We headed to a hotel. Sleep was well overdue. We made it home around 4 PM this evening. Davis slept most of the way home. It was one of the few times that I actually enjoyed the drive. The rain was peacefully drizzling down and the colors on the trees seemed abnormally vibrant. So calm, so serene.
His chemo scheduled for Thursday and Friday has been postponed a week. He doesn't have the counts to support chemo as of now. He will go to Sarah Bush tomorrow to have another CBC draw. This will see if his counts have improved. That is the goal. If his hemoglobin or platelets have dropped, we will make another trip down to St. Louis tomorrow for transfusions. If he still has this migraine and isn't eating or drinking, we will be heading back as well.
There's no place like home. We were gone for about 24 hours, but it has felt like days. Annakate greeted us with whining. It didn't take me long to see her runny nose. I grabbed the thermometer. Yep. a low-grade fever. She's sick. It looks like a cold or something along that line. Davis and Annakate have been quarantined to separate sections of the house, and I am dividing my time and attention between the two. With Davis' immune system being non-existent, it is vital that they stay away from one another.
My poor babies. You don't think about health much until you are not healthy. I pray that my children feel better soon. It is of utmost importance that Davis starts eating and drinking. We continue to pray against all of the side effects and for complete healing, but getting him to a healthier state and getting him back to school is our goal this week. Davis does so much better when he has routine in his life.
Thanks for your support. We appreciate all of the cards, texts, calls, and emails that you are sending our way. Very thoughtful. You never cease to touch our hearts with your kindness.
We will keep you posted.
Monday, October 10, 2011
Fewer Blogs = Good Days
10/10/2011: 3:30 PM
I apologize for doing a poor job at keeping up with the blog. When Davis is well and his ANC is high enough, we sqeak in as many normal activities as possible. We have been busy lately.
Friday was supposed to be a quick trip to St. Louis. Our appointment was at 10 A.M. The only chemo Davis was to receive was a push through his port (basically a shot in an IV) and a 45-minute platelet transfusion. Normal platelet levels are between 150-400. On Friday, Davis was at 8. Yikes! Unfortunately, Davis can only have a certain type of platelets because of his blood type and the hospital was out of matching platelets. They had to be ordered from the Red Cross, and the Red Cross truck didn't arrive with the platelets until 2:00 PM. No real complaints though. We just hung out in the chemo lounge. Davis played on the computer and I did a lot of nothing. We were finally on our way home a little after 3 P.M. So much for a short day.
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| a young monet, perhaps? |
Recap of last week . . . Davis had a great week. He was able to get up early on Wednesday to attend his first student student council meeting. The group is getting ready to fundraise for polio. He decorated his "Pennies for Polio" can a few days ago. He sure has been completing a lot of projects as of late. After school, we ran to Sarah Bush for bloodwork before rushing back to Charleston for his painting class. He finished his Monet-style watercolor painting. He began feeling ill shortly after eating supper, so we ended our evening there. I had a hunch that his blood might be a bit off since his energy and appetite dropped off drastically.
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| field trip fun |
Thursday finally arrived. We had to get up super early to go to school because Davis and his class had a field trip to the Challenger Space Center in Bloomington. While the teachers awaited for all of the students to arrive, I armed myself with a bucket of Lysol and bleach water and wiped down all of the seats of the bus. I worked up a sweat at 6:20 in the morning. I rode with a few other mothers as we followed the bus up. The field trip was amazing. I had just as much fun as the kids did. Davis actually thinks he went into outerspace. If you are not familiar with the Challenger Space Center, the kids are given jobs similar to what Mission Control and astronauts would have. Then, they go into this simulated space shuttle to try to complete a mission. They have to read gauges, report humidity, put together a probe, communicate with mission control, measure items using robotics, etc. It was very hands-on. The afternoon consisted of hands-on lessons in physics - a concept hard for 5th graders to understand. The kids were so well-behaved and everyone seemed to really enjoy themselves.
Friday was supposed to be a quick trip to St. Louis. Our appointment was at 10 A.M. The only chemo Davis was to receive was a push through his port (basically a shot in an IV) and a 45-minute platelet transfusion. Normal platelet levels are between 150-400. On Friday, Davis was at 8. Yikes! Unfortunately, Davis can only have a certain type of platelets because of his blood type and the hospital was out of matching platelets. They had to be ordered from the Red Cross, and the Red Cross truck didn't arrive with the platelets until 2:00 PM. No real complaints though. We just hung out in the chemo lounge. Davis played on the computer and I did a lot of nothing. We were finally on our way home a little after 3 P.M. So much for a short day.  |
| I can't believe I did that to him |
We pulled into the driveway on Friday evening around 6 P.M. Davis and Annakate were flitting about the car. I was barking orders to help carrying in the collection of stuff that had made it from the house to the car over the course of the last couple of days. I loaded myself down with backpacks, a computer bag, my purse, a blanket and pillow, and used my hip to shut the door to the car. Before I knew it, I was flat on the pavement. Davis, who was experiencing some car sickness, had stepped out of the car and kneeled down in the driveway to allow his dizziness to pass. Obviously, I didn't see him and tripped right over him. Figures. Just when the doctor warns us about his low platelets and no bumps, scrapes, or hits. . . Davis was fine. I did call the doctor because within seconds - not minutes - seconds, the bruises started to appear. Poor guy. His legs look horrible, but thankfully, they don't hurt. He gets a kick out of showing people his bruises. He says, "Hey, look what my mom did to me."
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| a turtle and a pig |
Davis's appetite increase was short lived and he has fallen back into his pattern of not eating or drinking very much. He was back down to 59 lbs. from 61 lbs. the previous week. Kyle has challenged him to weighing 70 pounds by Christmas, but that seems a bit out of reach at this point.
Davis enjoyed pottery on Saturday. He ran out of time to glaze his turtle because he is in the process of making a piggy bank. Definitely a work in progress.
We found out on Friday that Davis is to avoid pumpkin patches, straw, hay, and farming in general. There are many molds that grow on those things and on dead leaves and such around this time of year, and those molds and fungi are what cause serious lung infections in children with suppressed immune systems. Davis complained quite a bit when he found out that he couldn't go to the pumpkin patches he has gone to his entire life, but so be it. There will be next year.
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| pennies for polio project |
Davis starts the next phase in the consolidation phase this week. It is shorter (41 days) but appears to be harder. He will have chemo on Thursday and Friday of this week. He will receive methotrexate (a chemo Davis doesn't particularly do well with) through his port and via spinal in addition to other chemo on Thursday. On Friday, he will receive another set of Peg shots. If his counts (ANC and platelets) aren't high enough for treatment, chemo will be postponed for a week.
We will keep you posted.
Monday, October 3, 2011
A Few More Firsts
10/3/2011: 12:11 PM
I am so grateful that so many people are willing to go the extra mile or be inconvenienced by Davis's special needs. It is terribly difficult for a child who has cancer to feel "normal". With the help of these teachers, students in his class, his friends and their parents among others, Davis leads a very "normal" life.
This weekend was pretty fantastic overall. The kids managed to play a great deal of Wii, and we had a movie night/slumber party as is our family tradition. Davis experienced virtually no side effects until Sunday evening. Davis has developed mouth sores (side effect of the chemo). Basically, they are canker sores on the sides of his mouth and on his tongue. Many people get them while on chemo. Davis has been so blessed to have not had them up to this point, and I pray that we are able to keep them under control or that they go away so the mouth pain doesn't affect his appetite.
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| davis entertained us by clipping on annakate's fake hair and singing hisversion of willow's, "whip my hair". |
Unbeknownst to me, a friend of mine at work organized a get-together with many of my work friends. I thought I was meeting two for supper. There ended up being eight of us. It was incredible to sit with my friends and talk about things outside of cancer. It brought me such peace to know that school life is clicking along without me, but it hasn't changed too much. I think that one of my fears is that so much will change at school (my work) that I will be starting all over again next year. I feel like sometimes I am losing my point of reference. Anyway, it was a perfect evening at Pagliai's. We plan on doing it again. Thanks go out to my friend, Lisa Taylor, for organizing and not taking no for an answer and to the gals who came. It meant a great deal to me.
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| platelet transfusion |
Friday came and went. Thank goodness. Davis met with his psychologist, and they worked on breathing techniques. Davis hung out in the clinic for the rest of the day. He received his first platelet transfusion. Platelets look like Tang! I guess we just thought since they were in blood, they were red. Not the case. After he received his platelets, he received his Peg shots and Vincristine. He did an amazing job. He cried during the shots, but I am pretty sure that the toughest grown man would have cried too. He said the shots hurt more than usual, and the nurse told him that the dose had increased. Because of weight and muscle loss, his legs are smaller as well. After the chemo, he received a blood (hemoglobin) transfusion, and we were on our way home by late afternoon.
Kyle came up with this idea to have a present on hand to reward Davis for his hard day. I wrapped up a couple of things he had asked for, and we took it with us to St. Louis. He was so amazingly brave and was tickled to open up his gift. It was nothing too exciting, but the Webkins beaver, now named Pegs, and the bakugon were nice distractions for the day. I assumed that we were done with the Pegs for awhile, but that is not the case. Starting in two weeks, Davis will receive increased doses of Pegs shots every ten days or so for 41 days. Looks like I will have to start shopping for more rewards.
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| junk food galore. oh, and pegs, the beaver |
Davis's appetite has greatly improved. He actually gained two pounds! He now weighs 61 pounds, a far cry from where a healthy ten-year-old should be. He is drawn to junk food. And although the junk meets his high calorie diet and the sweets help with his bouts of hypoglycemia, I don't want him to develop poor eating habits. Davis and I agreed to better eating starting today. We will see how that goes.
Davis went to his first pottery class. He LOVED it. His teacher is extremely nice and knowledgeable and identifies with kids very well. Davis's first lesson was to make a turtle. His homework is to create a dog. He plans on working on that tonight. I am kicking myself for not taking a picture of the turtle. I will be sure to get one after it is fired and glazed. Davis is very much into animals, so starting out with animal sculpting makes sense. When Davis becomes more experienced, he will move to a wheel. I jokingly told him that I better get a mug or a bowl for Christmas.
I am so grateful that so many people are willing to go the extra mile or be inconvenienced by Davis's special needs. It is terribly difficult for a child who has cancer to feel "normal". With the help of these teachers, students in his class, his friends and their parents among others, Davis leads a very "normal" life.
This weekend was pretty fantastic overall. The kids managed to play a great deal of Wii, and we had a movie night/slumber party as is our family tradition. Davis experienced virtually no side effects until Sunday evening. Davis has developed mouth sores (side effect of the chemo). Basically, they are canker sores on the sides of his mouth and on his tongue. Many people get them while on chemo. Davis has been so blessed to have not had them up to this point, and I pray that we are able to keep them under control or that they go away so the mouth pain doesn't affect his appetite.Davis has a big day on Thursday. His class will be going to Bloomington to the Challenger Space Center. He received the OK from the oncologist on Friday, and he even gets to ride the bus! I know that doesn't sound exciting to most, but Davis has been banned from bus riding because of the amount of germs on one. I find humor in that most kids could care less about riding a bus, and Davis would feel accomplished if he just hopped on a bus for a spin. Perspective, I guess. I am going to remember this experience, and the next time I hear one of my students complain about riding a bus, I will tell them that they should be thrilled to ride the bus. :) Not sure if it will work. Anyway, I do have to clean the area where Davis will be sitting, and I might as well wipe down the whole bus in an effort to keep all of the kids healthy, but that is no big deal. I can clean and sterilize things in my sleep. The field trip should be a blast. The kids have done a great deal of learning to prepare themselves for this day. Can't wait.
Kyle is harvesting acre by acre (as if there was another way). On Friday evening as we were pulling into town on our way home from St. Louis, I noticed a parked combine and three men - three very familiar men - staring into the head. It is never a good sign to see men staring at a parked combine. Needless to say, Kyle picked up an old guy-wire in his bean head. No real worries. It was fixed a day later. Accidents like this happen all of the time; you just don't want them to.
Music has always been a refuge to me. I thought I would share some of the songs that comfort me on this journey. The first one is about breast cancer (October is breast cancer awareness month), but the chorus is so true about all those who love someone who has cancer. I have attached the video if you are interested in checking it out.
Another song I adore is by a band called Rascal Flatts. The very first time I heard this song was when one of my students handed me her Ipod and insisted that I listened to it. Even though I immediately loved it then, the lyrics mean so much more to me now. Click on the link to view:
http://www.cmt.com/videos/rascal-flatts/599179/i-wont-let-go-cmt-invitation-onl.jhtml?artist=710215
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| love this picture. love these guys more. |
We continue to get along surprisingly well. We know that Davis is doing so well because of God's goodness and your continued support and prayers. We couldn't have asked for better family, friends, or communities. We pray for Davis to overcome these mouth sores. He has greatly improved in taking his medications without a fight, but some days prove to be harder than others. We are so thankful that he has energy and appetite, and we pray that those continue. We also pray for the health of his classmates. Wouldn't it be quite a testimony if the children in Mrs. Meyer's and Miss. Goodchild's classes escape major sicknesses all year? Well, I am believing for it. We continue to pray against long term and short term side effects as well as healing and CURE.
Looking forward to a great week. I will be sure to take pictures at the Challenger Space Center.
We will keep you posted.
P.S. Miss. Franklin, please send me your email address to abcoffey77@gmail.com, and I will be in touch. Thanks!!
P.S. Miss. Franklin, please send me your email address to abcoffey77@gmail.com, and I will be in touch. Thanks!!
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