Life at the Coffey house is in a bit of a whirlwind. Amanda is floating in the Gulf of Mexico with her friend Kim Arthur while the children want to see her. Thank God for skype. We get a free trip every year with our seed company and I told her I would stay back this time with Davis and Anna. My brother and I took one about five years ago, so it technically was her turn. As far as Davis goes, he had a bit of a scare Sunday night with some troubles breathing. We took a speedy trip to the ER to get him checked out. Cody Yocum and Brother Doughty were there when we got there. Apostolic Center people are quite awesome. Annakate had texted a little girl from church on our speedy ride to the hospital and the news got to a few of our friends. It turns out he is ok. It was probably a little anxiety attack. The poor little guy has so many things going through his head.
As you can probably tell, I do not have the writing abilty of my wife. But I sure can brag on the Lord just like her. We are a blessed family. God will heal my son and God will get all the glory. This has been a tough stretch in our lives, but God is preparing the way every step we take. We are truly nothing without the Lord. When you say a prayer for our son this week, please think of someone who has walked away from the Lord and pray for them. God richly bless all of you!!
Tuesday, February 7, 2012
Saturday, February 4, 2012
Fluids on the Go
2/4/2012: 10:18 AM
After school on Wednesday, I took Davis over to get counts. We are used to the routine. The process - one tube for a CBC (complete blood count) and two small tubes for a CMP (complete metabolic panel) took nearly an hour because Davis' blood clots very easily. The tech has to keep poking different fingers to get a good draw. Davis isn't bothered by the pokes and is pretty patient, so it is no big deal.
We received the counts Wednesday evening, and chemo was on for Friday. Davis' counts had jumped considerably from the previous week. His ANC was in the hundreds the week before making him neutropenic, and this week it was at 1224! Not the healthy 1500 and over we like to see, but a great recovery from the 213 from last week. Actually, all of his numbers trended up except his hemoglobin.
Friday started pretty early. Kyle woke Davis up at 4:45 AM to eat a bowl of cereal. Davis couldn't have any food after 5:00 AM due to the lumbar puncture he would receive at noon. We were pulling out of the driveway at 5:20 AM. A quick trip to my in-laws to drop off Annakate and we were on our way to Children's. Poor Kyle. No company. Davis and I slept the entire way down to St. Louis. We were ushered into a room at 8:20 AM where Davis met with his doctor. He was accessed and a blood draw was sent off to determine if his hemoglobin had dropped below 8. Davis was immediately started on fluids (a saline, sugary mix). He was to receive a chemotherapy called Cytoxin. Cytoxin can do damage to the kidneys and bladder if the body isn't properly hydrated. Therefore, Davis is pumped full of fluids, his urine output it monitored and tested to see how concentrated it is, and when the urine reaches a certain dilution, the chemo (a 30 minute bag) is administered.
Midmorning, we found out that Davis' hemoglobin had dropped and he would need a transfusion. The rest of the morning was a bunch of waiting. My in-laws, Gary and Marylee, popped in, and kept us company. Davis' mood improved considerably.
At 11:00 AM, we headed to the APC (Ambulatory Procedure Center) for Davis' spinal. His appointment was at noon, but the child scheduled two ahead of him had some major complications, so Davis didn't actually go back for his procedure until 1:10 PM. The waiting added to the length of our day. We were back up on ninth floor at 2:00 PM.
A little after 2:00 PM, Davis' urine tested at the hydrated level, and Cytoxin was administered. He hates this. The chemo makes his nose sting, and there is nothing that can be done. He held his nose to a blanket and cried for thirty minutes straight. After the Cytoxin, Davis received the Ara-C (four day chemo) on a pump over ten minutes. The unit of blood Davis was to receive was then started. Blood takes forever to transfuse. When Davis was all finished and his fluid pump was hooked up, it was 5:45 PM. Davis was the first patient there in the morning and the very last to leave. We pulled in the driveway at 8:45 PM. A very long day indeed.
Because the Cytoxin is so very potent, Davis was put on a 4-hour fluid pump for the evening. It was quite interesting. He was basically on an IV drip via his port. He was given a little travel bag for his bag of fluids and the pump.
Davis will have Ara-C (four days of chemo) this weekend and next. Kyle will administer the chemo every day and de-access his port on Monday. Davis started a new oral chemo. He will have to take it for the next two weeks. Davis hates it; he says it tastes disgusting. But since he is still not able to take pills, he is stuck drinking this bitter liquid.
If all goes well and Davis is not hospitalized for any illness over the next couple of weeks, Davis will be done with this roadmap (treatment plan) on February 24. We will then officially be in the 2 1/2 year Maintenance Phase and chemo treatments are expected to decrease to once or twice a month.
We are happy to have our very long day behind us, and we are blessed to have a son who is doing so well despite the circumstances. We thank you for your thoughts and prayers and encouragement, because it is a constant reminder that even though the journey is long, we are not braving it alone. I am pretty sure now that a family can't survive cancer and not be completely and permanently changed by the experience. The mundane is washed away and perspective is altered. I am thankful for that.
We will keep you posted.
 |
| Davis is rocking his own CBC so it doesn't clot. |
We received the counts Wednesday evening, and chemo was on for Friday. Davis' counts had jumped considerably from the previous week. His ANC was in the hundreds the week before making him neutropenic, and this week it was at 1224! Not the healthy 1500 and over we like to see, but a great recovery from the 213 from last week. Actually, all of his numbers trended up except his hemoglobin.
 |
| Beginning of fluids |
Midmorning, we found out that Davis' hemoglobin had dropped and he would need a transfusion. The rest of the morning was a bunch of waiting. My in-laws, Gary and Marylee, popped in, and kept us company. Davis' mood improved considerably.
At 11:00 AM, we headed to the APC (Ambulatory Procedure Center) for Davis' spinal. His appointment was at noon, but the child scheduled two ahead of him had some major complications, so Davis didn't actually go back for his procedure until 1:10 PM. The waiting added to the length of our day. We were back up on ninth floor at 2:00 PM.
 |
| Waiting on Davis to wake from anesthesia after spinal. The nurse tried cushioning his leg with an egg crate. Davis experiences right leg pain after a spinal. We were hoping this would help. It didn't. It is now assumed that there is a nerve near when he is accessed for the spinal. |
 |
| Blood transfusion. |
If all goes well and Davis is not hospitalized for any illness over the next couple of weeks, Davis will be done with this roadmap (treatment plan) on February 24. We will then officially be in the 2 1/2 year Maintenance Phase and chemo treatments are expected to decrease to once or twice a month.
We are happy to have our very long day behind us, and we are blessed to have a son who is doing so well despite the circumstances. We thank you for your thoughts and prayers and encouragement, because it is a constant reminder that even though the journey is long, we are not braving it alone. I am pretty sure now that a family can't survive cancer and not be completely and permanently changed by the experience. The mundane is washed away and perspective is altered. I am thankful for that.
We will keep you posted.
 |
| We killed some time with the timer on my camera. What started out as a picture of Davis and Mom turned into 45 minutes of hysterical picture taking. |
Tuesday, January 31, 2012
Somewhere Between Concern and Panic
1/31/2012: 11:31 AM
We have been enjoying this long stretch of good weather and great health.
Davis continues to feel pretty awesome, and we have had no fevers. He did, however, start complaining of a headache and a little bit of dizziness, which leads us to believe that his red blood cell count is low. As of this morning, he felt fine. I told him to call and we would run over to the hospital to get a CBC if the symptoms came back. He is scheduled for a CBC (complete blood count) and CMP (complete metabolic panel) tomorrow; I guess we will find out then. His blood draw tomorrow will determine if he will have chemo on Friday. If he doesn't make counts, it will be postponed for yet another week.
Annakate told us this weekend that she found a lump on the side of her neck. Kyle and I checked it out, and sure enough there was a swollen lymph node of the right side of her neck. If you remember, Davis had one - just one- swollen lymph node on the left side of his neck for weeks before he started exhibiting other signs. I can't speak for Kyle (but I am pretty sure he felt the same), but old-fashioned fear immediately kicked in. All of the memories and feelings that we felt with Davis back in May came flooding back. But it was worse, because in May, we were ignorant and naive to warning signs of Davis' cancer. I have always found worrying to be counterproductive and bad for one's health, so I try not to partake, but it has been a battle to keep worry at bay. One child in 1000 is diagnosed with Leukemia, so the odds of Annakate having it are very, very rare, but with that being said, she is at a 2-4% higher risk because of Davis.
The doctor comforted us some. Annakate has had several ear infections over the last few months. The swollen lymph node is probably a result of fighting off infection after infection. The doctor checked all of Annakate's other lymph nodes, and there is nothing that would indicate alarm. We are just going to keep an eye on it for a couple of weeks. I am sure with time and prayer it will go away. 99.9% of the time, it is nothing; and I am sure this is the case here. I hope. The doctor is very agressive if she feels there is something wrong, and she understands our near psychosis about our children's health. I will say, it took all I had in me to hold back the tears when she said, "We'll just keep an eye on it."
Bottomline: It's probably nothing, and God is good.
As for Davis and treatment, we are at the mercy of his ANC. From what we have learned about ANCs, there is little that can be done to manipulate them. (ANC stands for absolute neutrophil count and is basically the immune system.) He needs to have an ANC over 750 to move forward with treatment; however, his body is so worn down from undergoing seven months of chemo, the counts aren't bouncing back like they used it. In a way, this is a good thing. We know that his body hasn't become resilient to the chemo. The doctor reminded us yesterday that the chemo is doing its job. It's killing all of the cancer cells, and in order to do that, it kills a lot of the good cells too.
Back in July, four days after Davis was diagnosed, we were given a roommate who had a tumor in his chest. He was just a couple of months older than Davis. We were blessed enough to form a friendship with Jordan and his family. My heart ached for Jordan's parents because where they were when we met them was where we were five days before: pre-diagnosis - the time when there are so many questions and there are very few answers, and everyone (the doctors and nurses) are extremely tight-lipped. Jordan was diagnosed with Non-Hodgkin's Lymphoma (the cousin to Leukemia). Anyway, I bring this up becauseJordan received a PET scan yesterday to determine if he is completely cancer-free. He has already finished all of his chemo and has even rang the bell. (a big deal in cancer land. When one finishes all cancer treatment, the person gets to ring the bell. There are cheers, celebrations, partying galore. I now rank the sound of the bell as one of the best sounds in all the world, right below my babies' first cries and the sounds of their laughter.) I know you don't know him, but if you could pass along some positive thoughts and prayers on behalf of Jordan and his family, I know they would greatly appreciate it.
I am attaching a link of a recent story done on Jordan. Feel free to check it out.
Recent News Story on Jordan
We ask that you continue to remember our family in your thoughts and prayers. Please remember Annakate. Although she is not sick and the swollen lymph node is probably nothing, I am sure that the thought of what it might be weighs heavy on her. Sometimes I forget that she has been forever changed because of cancer too. And we are also grateful for your concern, encouragement, thoughts, and prayers.
Opportunities to find deeper powers within ourselves come when life seems most challenging. Joseph Campbell
The struggle of life is one of our greatest blessings. It makes us patient, sensitive, and Godlike. It teaches us that although the world is full of suffering, it is also full of the overcoming of it.
Helen Keller
We will keep you posted.
We have been enjoying this long stretch of good weather and great health.
Davis continues to feel pretty awesome, and we have had no fevers. He did, however, start complaining of a headache and a little bit of dizziness, which leads us to believe that his red blood cell count is low. As of this morning, he felt fine. I told him to call and we would run over to the hospital to get a CBC if the symptoms came back. He is scheduled for a CBC (complete blood count) and CMP (complete metabolic panel) tomorrow; I guess we will find out then. His blood draw tomorrow will determine if he will have chemo on Friday. If he doesn't make counts, it will be postponed for yet another week.
Annakate told us this weekend that she found a lump on the side of her neck. Kyle and I checked it out, and sure enough there was a swollen lymph node of the right side of her neck. If you remember, Davis had one - just one- swollen lymph node on the left side of his neck for weeks before he started exhibiting other signs. I can't speak for Kyle (but I am pretty sure he felt the same), but old-fashioned fear immediately kicked in. All of the memories and feelings that we felt with Davis back in May came flooding back. But it was worse, because in May, we were ignorant and naive to warning signs of Davis' cancer. I have always found worrying to be counterproductive and bad for one's health, so I try not to partake, but it has been a battle to keep worry at bay. One child in 1000 is diagnosed with Leukemia, so the odds of Annakate having it are very, very rare, but with that being said, she is at a 2-4% higher risk because of Davis.
Bottomline: It's probably nothing, and God is good.
As for Davis and treatment, we are at the mercy of his ANC. From what we have learned about ANCs, there is little that can be done to manipulate them. (ANC stands for absolute neutrophil count and is basically the immune system.) He needs to have an ANC over 750 to move forward with treatment; however, his body is so worn down from undergoing seven months of chemo, the counts aren't bouncing back like they used it. In a way, this is a good thing. We know that his body hasn't become resilient to the chemo. The doctor reminded us yesterday that the chemo is doing its job. It's killing all of the cancer cells, and in order to do that, it kills a lot of the good cells too.
Back in July, four days after Davis was diagnosed, we were given a roommate who had a tumor in his chest. He was just a couple of months older than Davis. We were blessed enough to form a friendship with Jordan and his family. My heart ached for Jordan's parents because where they were when we met them was where we were five days before: pre-diagnosis - the time when there are so many questions and there are very few answers, and everyone (the doctors and nurses) are extremely tight-lipped. Jordan was diagnosed with Non-Hodgkin's Lymphoma (the cousin to Leukemia). Anyway, I bring this up becauseJordan received a PET scan yesterday to determine if he is completely cancer-free. He has already finished all of his chemo and has even rang the bell. (a big deal in cancer land. When one finishes all cancer treatment, the person gets to ring the bell. There are cheers, celebrations, partying galore. I now rank the sound of the bell as one of the best sounds in all the world, right below my babies' first cries and the sounds of their laughter.) I know you don't know him, but if you could pass along some positive thoughts and prayers on behalf of Jordan and his family, I know they would greatly appreciate it.
I am attaching a link of a recent story done on Jordan. Feel free to check it out.
Recent News Story on Jordan
We ask that you continue to remember our family in your thoughts and prayers. Please remember Annakate. Although she is not sick and the swollen lymph node is probably nothing, I am sure that the thought of what it might be weighs heavy on her. Sometimes I forget that she has been forever changed because of cancer too. And we are also grateful for your concern, encouragement, thoughts, and prayers.
Opportunities to find deeper powers within ourselves come when life seems most challenging. Joseph Campbell
The struggle of life is one of our greatest blessings. It makes us patient, sensitive, and Godlike. It teaches us that although the world is full of suffering, it is also full of the overcoming of it.
Helen Keller
 |
| Saturday night visit from a small fraction of the Meyer family. They surprised us with their newest edition (Cody's). Annakate fell in love with Riley, the puppy. I am sure I would have too, but Annakate monopolized puppy time. |
We will keep you posted.
Friday, January 27, 2012
Come On, Counts!
01/27/2012: 9:02 AM
No chemo today.
The nurse called yesterday to let us know that Davis' chemo and spinal was cancelled for today because his counts are too low. His platelets have to be over 75; they were 71, and his ANC (immune system) had to be over 750; his ANC was 213. Not even close. His hemoglobin had dropped too, so I was reminded to watch for symptoms (excessive sleepiness, drop in energy, headaches). suggesting he may need a transfusion in the next few days.
If a transfusion doesn't seem necessary, Davis will have another CBC blood test on Wednesday, which will determine if his counts are high enough for chemo on Friday. If not, we wait another week.
In the meantime, we will just keep on keeping on. Despite having a next-to-nothing immune system, Davis is still attending school. We have noticed a bit more sickness (Fifth's, stomach flu, and sore throats) creep into his fifth grade wing and into his classroom, so I am not sure how long Davis will be attending. It is definitely a balancing act. We continue to take precautions against the spreading of germs and pray for the health of the students and teachers who attend school with Davis.
Davis has developed a bit of a skin rash on his hands. I immediately recognized it as eczema. Davis had eczema as an infant and toddler, and my little sister had it on her hands growing up. It looks identical to what I remember her having. My guess is that the cold weather and low immune system has triggered it. We are treating it now, but his little hands are so raw.
Despite being injected with a great deal of chemo that causes hair loss, Davis' hair continues to grow. I am not sure how long it will stay, but I am surprised he has kept his new growth this long. His hair looks odd up-close. He has his dark new growth, and he still has his sporadic light, longer hair that has never fallen out. I keep suggesting that we buzz off the longer locks to make his hair look more uniform, but he refuses. Although his hair is sticking around, other rapid growth cells are not. He was rubbing his eyes a couple of days ago, and a significant chunk of eyelashes fell out. His eyelashes are incredibly long, so it is very noticeable. His eyebrows are still falling out and his taste buds continue to change.
We are looking forward to a peaceful weekend. We will continue to watch Davis for fevers. A fever would indicate an infection, and Davis would be transported to Children's. We would love to avoid that at all costs, so we just keep praying for his health.
We ask that you help us in doing the same. We always appreciate your positive thoughts and prayers, and we know that Davis and our family wouldn't be doing as well as we are without the grace of God and your support and encouragement.
Your present circumstances don't determine where you can go,; they merely determine where you start. -Nido Qubien
We will keep you posted.
No chemo today.
The nurse called yesterday to let us know that Davis' chemo and spinal was cancelled for today because his counts are too low. His platelets have to be over 75; they were 71, and his ANC (immune system) had to be over 750; his ANC was 213. Not even close. His hemoglobin had dropped too, so I was reminded to watch for symptoms (excessive sleepiness, drop in energy, headaches). suggesting he may need a transfusion in the next few days.
If a transfusion doesn't seem necessary, Davis will have another CBC blood test on Wednesday, which will determine if his counts are high enough for chemo on Friday. If not, we wait another week.
In the meantime, we will just keep on keeping on. Despite having a next-to-nothing immune system, Davis is still attending school. We have noticed a bit more sickness (Fifth's, stomach flu, and sore throats) creep into his fifth grade wing and into his classroom, so I am not sure how long Davis will be attending. It is definitely a balancing act. We continue to take precautions against the spreading of germs and pray for the health of the students and teachers who attend school with Davis.
Davis has developed a bit of a skin rash on his hands. I immediately recognized it as eczema. Davis had eczema as an infant and toddler, and my little sister had it on her hands growing up. It looks identical to what I remember her having. My guess is that the cold weather and low immune system has triggered it. We are treating it now, but his little hands are so raw.
Despite being injected with a great deal of chemo that causes hair loss, Davis' hair continues to grow. I am not sure how long it will stay, but I am surprised he has kept his new growth this long. His hair looks odd up-close. He has his dark new growth, and he still has his sporadic light, longer hair that has never fallen out. I keep suggesting that we buzz off the longer locks to make his hair look more uniform, but he refuses. Although his hair is sticking around, other rapid growth cells are not. He was rubbing his eyes a couple of days ago, and a significant chunk of eyelashes fell out. His eyelashes are incredibly long, so it is very noticeable. His eyebrows are still falling out and his taste buds continue to change.
We are looking forward to a peaceful weekend. We will continue to watch Davis for fevers. A fever would indicate an infection, and Davis would be transported to Children's. We would love to avoid that at all costs, so we just keep praying for his health.
We ask that you help us in doing the same. We always appreciate your positive thoughts and prayers, and we know that Davis and our family wouldn't be doing as well as we are without the grace of God and your support and encouragement.
Your present circumstances don't determine where you can go,; they merely determine where you start. -Nido Qubien
We will keep you posted.
Tuesday, January 24, 2012
Learning the Lesson the Hard Way or Hard Lesson to Learn?
1/24/2012: 10:21 PM
Things have been going relatively well. Every one is healthy.
Davis is notorious for negotiating when it comes to taking his medication. He is incredibly bright and understands which medicines have to be taken (chemo and steroids) and which medications are less important (side effects medications). And although we require him to take all of his medications, he will occasionally try to manipulate us or the system. He will often tell us that he can't take this one particular medicine, Neurontin. It is an anti-seizure medication used to treat the side effects of one of his chemotherapy drugs, Vincristine. He is required to take a few ml twice a day. Sometimes he is nauseous and won't take it, and other times he will take a portion of the required dose. He always reminds us, "I haven't had Vincristine in awhile; it won't be a problem" or "I haven't had side effects from Vincristine since July, I'll be fine." Ok. Whatever. One would think that he would be accustomed to taking medication by now, but he is Davis, and he is stubborn. Very stubborn. (Sadly, I think this character trait is from me or so I have been told). There were a few missed or partial doses this week. And Sunday came. Davis was unable to move the muscles in his arms without excruciating pain. He couldn't pick up a fork to eat nor could he pick up his drumsticks or toothbrush. He was miserable. This was our "I told you so" moment, but it was squelched by his suffering. We had to call his doctor. The doctor raised his dose of Neurontin; he now takes it three times a day, and he was placed on Oxycodone for a few days until the Neurontin kicked in. I am sure that other parents would agree that it is frustrating to sit back and watch your child learn lessons the hard way. However, it appears sometimes (at least in our case) that may be the only way he learns. Amazingly, he has discovered the pain goes away and stays away when he takes the medicine diligently at the proper dose.
We welcome the routine. I love noises of home life: the hum of the TV, the buzzer to the dryer, Davis playing the snare, Annakate listening to music. It is as it should be.
I was able to go to Oakland (to the school in which I work) and visit a bit today. It was so nice to see my work friends. I think I didn't really know how much of an impact my co-workers made on my life until I took the year off. They make a great support system, and in many ways, it seems that teachers (at least in my district) are a family trying their best to see a bunch of kids (high school in my case) find their way to success out in the world. I know it may sound corny, but I think that the teachers I work with would agree that we rejoice in our students successes and feel defeated when they fail. We hurt when they are broken-hearted and are full of joy when they are happy and content. Needless to say, I enjoyed my time, however brief, at Oakland today.
I thought that cleaning a fish tank was like riding a bike - something that comes back to you. Not the case, I found. In my defense, I haven't cleaned a fish tank in well over twenty years, and I don't really remember doing a whole lot of fish-tank cleaning when I was seven (what kid didn't have a fish tank in the 80s?), so I fumbled my way through some fish tank cleaning. It was gross and smelly, and I was drenched in water by the time I was finished, but I think the fish will thank me in their own little fish ways. Annakate's fish, Carmen, isn't looking too hot. His little belly is bloated, which is never a good sign. She has never been my sentimental softie, so I am not too worried about her struggling with her emotions in the event that Carmen heads to the Happy Hunting Grounds. I, on the other hand, am a bit more attached to the fish. I told the kids that I have been and will continue to pray for Carmen. They laughed.
Davis will have a CBC tomorrow afternoon, and we should have his counts result on Thursday. The results will confirm if Davis will need transfusions (platelets and/or red blood cells) and if his counts are high enough to receive chemo on Friday. We are hoping and praying that chemo won't be postponed since we are so close to being to the Maintenance phase. Davis looks great; I will be surprised if he needs red blood cells. You never can really tell though.
We still continue to pray against the short term and long term side effects that go along with this illness, and we fervently pray that Davis is healed from cancer forever. We are thankful and feel truly blessed that Davis has been so healthy (especially with no immune system) for so long. We also are truly grateful that Davis has been fortunate enough to attend school on a regular basis. He needs school. It is his escape from all things cancer.
Thank you for your positive thoughts and prayers. They are working.
Some days there won't be a song in your heart. Sing anyway. -Emory Austin
We will keep you posted.
Things have been going relatively well. Every one is healthy.
Davis is notorious for negotiating when it comes to taking his medication. He is incredibly bright and understands which medicines have to be taken (chemo and steroids) and which medications are less important (side effects medications). And although we require him to take all of his medications, he will occasionally try to manipulate us or the system. He will often tell us that he can't take this one particular medicine, Neurontin. It is an anti-seizure medication used to treat the side effects of one of his chemotherapy drugs, Vincristine. He is required to take a few ml twice a day. Sometimes he is nauseous and won't take it, and other times he will take a portion of the required dose. He always reminds us, "I haven't had Vincristine in awhile; it won't be a problem" or "I haven't had side effects from Vincristine since July, I'll be fine." Ok. Whatever. One would think that he would be accustomed to taking medication by now, but he is Davis, and he is stubborn. Very stubborn. (Sadly, I think this character trait is from me or so I have been told). There were a few missed or partial doses this week. And Sunday came. Davis was unable to move the muscles in his arms without excruciating pain. He couldn't pick up a fork to eat nor could he pick up his drumsticks or toothbrush. He was miserable. This was our "I told you so" moment, but it was squelched by his suffering. We had to call his doctor. The doctor raised his dose of Neurontin; he now takes it three times a day, and he was placed on Oxycodone for a few days until the Neurontin kicked in. I am sure that other parents would agree that it is frustrating to sit back and watch your child learn lessons the hard way. However, it appears sometimes (at least in our case) that may be the only way he learns. Amazingly, he has discovered the pain goes away and stays away when he takes the medicine diligently at the proper dose.
We welcome the routine. I love noises of home life: the hum of the TV, the buzzer to the dryer, Davis playing the snare, Annakate listening to music. It is as it should be.
 |
| practice. practice. practice. |
I thought that cleaning a fish tank was like riding a bike - something that comes back to you. Not the case, I found. In my defense, I haven't cleaned a fish tank in well over twenty years, and I don't really remember doing a whole lot of fish-tank cleaning when I was seven (what kid didn't have a fish tank in the 80s?), so I fumbled my way through some fish tank cleaning. It was gross and smelly, and I was drenched in water by the time I was finished, but I think the fish will thank me in their own little fish ways. Annakate's fish, Carmen, isn't looking too hot. His little belly is bloated, which is never a good sign. She has never been my sentimental softie, so I am not too worried about her struggling with her emotions in the event that Carmen heads to the Happy Hunting Grounds. I, on the other hand, am a bit more attached to the fish. I told the kids that I have been and will continue to pray for Carmen. They laughed.
 |
| happy fish |
We still continue to pray against the short term and long term side effects that go along with this illness, and we fervently pray that Davis is healed from cancer forever. We are thankful and feel truly blessed that Davis has been so healthy (especially with no immune system) for so long. We also are truly grateful that Davis has been fortunate enough to attend school on a regular basis. He needs school. It is his escape from all things cancer.
Thank you for your positive thoughts and prayers. They are working.
Some days there won't be a song in your heart. Sing anyway. -Emory Austin
We will keep you posted.
 |
| I hope that Annakate doesn't adopt my OCD habit of ironing everything. I caught her ironing washcloths for fun. |
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| If you have ever spent much time with Kyle, you know how much fun he can be. While I was cleaning fish tanks tonight, he entertained the children with a little break dancing action. All dads do that, right? Well, our lives will definitely be lengthened by all of the laughter Kyle provides. |
Friday, January 20, 2012
And the Downward Spiral of Dropping Counts Continue
01/20/2012: 11:40 AM
What a week. Davis came home from school sick on Tuesday. He was extremely tired and had an upset stomach. We spent the day waiting to see what it was going to be. The steroids cause major acid reflux and tummy upset, and the stomach flu has been going around. The side effects of the steroids combined with not feeling well sent Davis into an irritable rage which lasted the greater part of the afternoon. It was awful. Thankfully, the upset stomach was caused by the medication and not a virus. He never developed any other symptoms, including a fever.
On Wednesday morning, Annakate woke up with a fever. Her belly was upset. She also had a terrible headache and some dizziness. Kyle got Davis off to school, and I tended to Annakate. A quick trip to the doctor confirmed that Annakate had a sinus infection and a stomach bug. Since it was unclear if the fever was caused by the sinus infection or the upset tummy, it was recommended that we played it on the safe side. Kyle and Davis went to stay with my in-laws for a couple of days, and Annakate and I stayed at home. It is not ideal, but we know of a few families who are fighting cancer who do this, and it seems to work for them. Annakate has been on antibiotics and has been fever-free since Wednesday, so Kyle and Davis will be back at home tonight.
I know it may seem that we go to the doctor a lot, and we do. Well, Davis goes to the doctor a lot. With Annakate, we don't feel like we have the luxury of the mind-over-matter or the let's-ride-it-out thinking anymore. Every illness that Annakate gets is a critical risk to Davis. A simple cold or flu bug can jeopardize Davis' life. I think that is one of the things I dislike the most about this experience (not that there aren't many).
Davis has been dragging in terms of energy. We were sure that by the way he was acting his hemoglobin had dropped and he would need a transfusion. However, I received a call from clinic this morning, and his counts aren't too bad. They sure aren't great, but no transfusion as of now. His hemoglobin was 9.5 (healthy is over 15, and Davis is transfused between 7 and 8), platelets were 75 (transfuse at 10). His biggest count hit was to his white blood cells and ANC. His white blood cells are 0.7 (healthy is between 5 and 10, and his count last week was 1.3), and his ANC is 105 (healthy is over 1500, and his ANC last week was 494). So now we pray and pray some more and hold our breaths. The white blood cells, where Davis' cancer is, can not be transfused. The body has to produce them on its own. The ANC is a combination of neutrophils and white blood cells. There is nothing physically one can do to raise an ANC. No food or exercise can change it. Rest or avoiding germy places doesn't bring it up either. The body has to recover these types of counts on its own.
We aren't sure why Davis is feeling so lethargic as of late.We will keep an eye on him, of course.
Obviously, with Davis' ANC being 105, we won't be doing a whole lot this weekend. We are looking forward to interacting as a family again. We don't mind the slower pace, especially since it has been feeling more like winter.
We will go to Sarah Bush for another CBC on Thursday. If Davis' counts don't improve, chemo may be postponed next week. Because of his spinal tap, he is required to have platelets over 75 (which can be transfused prior to the procedure) and an ANC of 750 or higher. The chemo is making it harder and harder for Davis' body to recover from the treatments. His body is just worn down. Although it breaks our hearts to see our little boy so weak and sick, it is a comfort to know that the chemotherapy is doing what it is supposed to be doing and that the means justify the end result.
We thank you again and always for praying for Davis and for our family. While we have only been fighting cancer for a little over six months, it feels like it has been much longer. And although I appreciate all of the lessons and blessings that cancer has brought into our lives, I long for the life we had before July 8th. I laugh a little when I think back to the times I thought I was really stressed . . . papers to grade, shuttling kids to activities, Wal-Mart runs, late nights, messy house . . . Life was really simple and easy; I was the one complicating it. I know that when our lives resume to a better sense of normal, I will have a whole new perspective on priorities and stress.
I think I forgot to tag a quote to the end of the last entry, so I am going to add two today.
Courage is not the absence of fear, but rather the judgment that something else is more important than fear. -Ambrose Redmoon
That some good can be derived from every event is a better proposition than that everything happens or the best, which it assuredly does not. -James K. Feibleman
We will keep you posted.
What a week. Davis came home from school sick on Tuesday. He was extremely tired and had an upset stomach. We spent the day waiting to see what it was going to be. The steroids cause major acid reflux and tummy upset, and the stomach flu has been going around. The side effects of the steroids combined with not feeling well sent Davis into an irritable rage which lasted the greater part of the afternoon. It was awful. Thankfully, the upset stomach was caused by the medication and not a virus. He never developed any other symptoms, including a fever.
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| science homework. |
I know it may seem that we go to the doctor a lot, and we do. Well, Davis goes to the doctor a lot. With Annakate, we don't feel like we have the luxury of the mind-over-matter or the let's-ride-it-out thinking anymore. Every illness that Annakate gets is a critical risk to Davis. A simple cold or flu bug can jeopardize Davis' life. I think that is one of the things I dislike the most about this experience (not that there aren't many).
 |
| my poor baby is miserable in this picture |
We aren't sure why Davis is feeling so lethargic as of late.We will keep an eye on him, of course.
Obviously, with Davis' ANC being 105, we won't be doing a whole lot this weekend. We are looking forward to interacting as a family again. We don't mind the slower pace, especially since it has been feeling more like winter.
We will go to Sarah Bush for another CBC on Thursday. If Davis' counts don't improve, chemo may be postponed next week. Because of his spinal tap, he is required to have platelets over 75 (which can be transfused prior to the procedure) and an ANC of 750 or higher. The chemo is making it harder and harder for Davis' body to recover from the treatments. His body is just worn down. Although it breaks our hearts to see our little boy so weak and sick, it is a comfort to know that the chemotherapy is doing what it is supposed to be doing and that the means justify the end result.
We thank you again and always for praying for Davis and for our family. While we have only been fighting cancer for a little over six months, it feels like it has been much longer. And although I appreciate all of the lessons and blessings that cancer has brought into our lives, I long for the life we had before July 8th. I laugh a little when I think back to the times I thought I was really stressed . . . papers to grade, shuttling kids to activities, Wal-Mart runs, late nights, messy house . . . Life was really simple and easy; I was the one complicating it. I know that when our lives resume to a better sense of normal, I will have a whole new perspective on priorities and stress.
I think I forgot to tag a quote to the end of the last entry, so I am going to add two today.
Courage is not the absence of fear, but rather the judgment that something else is more important than fear. -Ambrose Redmoon
That some good can be derived from every event is a better proposition than that everything happens or the best, which it assuredly does not. -James K. Feibleman
We will keep you posted.
Monday, January 16, 2012
Marvelous Mini-Vacation
01/16/2011: 8:40 PM
We enjoyed the routine of last week. Davis did fight us some on taking his medication. I thought we were beyond that, but I guess I was wrong. Sometimes I think he is too smart and logical for his own good. He has an amazing understanding of the needs for each of his medications. If he hasn't had the chemotherapy medication, Vincristine, in awhile, he doesn't think that he needs to take the side-effects medication, Neurontin. And while that makes sense, there are side-effects of the side-effects medication if he doesn't continue with the proper dosage at the proper times. And since he hasn't felt any of the side-effects of the side-effects medication, he doesn't think he is going to have any. Coining it as frustrating is significantly understating it.
Kyle took Davis to his chemo appointment on Friday. This past week's chemo was an easy one. No chemo is really easy, but this week's chemo took less than an hour to receive. Davis' counts were drawn in the clinic, and I received those later in the day on Friday. We had been warned that his counts would eventually drop, so it was no surprise when we got the read on Friday. Davis' white cells had dropped to 1.3 (5 to 10 is normal). His hemoglobin was still pretty good at 9.4 (transfused around 7, unless he is sick, and then transfused around 8). His platelets remained pretty strong. The biggest hit was to his ANC (immune system). It went from over 4000 last week to 494, which means he is neutropenic. Neutropenic is an immune system under 500 (above 1500 is healthy); being neutropenic puts Davis at a critical risk for infection/illness. That doesn't necessarily mean that he is going to get sick; it means that if he catches a viral or bacterial infection somewhere (cold and flu season), his body doesn't have the ability to fight it off. He would be hospitalized and the doctors use medication combos to ease some of the burden from his body. We are constantly trying to find the balance of allowing him the freedom of living a normal ten-year-old life and fighting the urge to wrap him in a bubble suit and keeping him in quarantine for as long as it takes.
The weekend came as a nice surprise. But let me back up a little. When Davis was approached about making a wish through the Make-A-Wish Foundation, his very first wish idea was to stay at a cabin we had stayed in a couple summers ago in Utica, Illinois. He thought that was one of the best vacations he had been on, and he wanted to do it again. Two and a half years ago, the entire Coffey family (Kyle's parents, Kyle's sister and her family, Kyle's brother and his family, and us) rented a cabin in Utica. There was plenty to do at the resort, and when we tired of that, we could head down the road and hike in the Starved Rock State Park. We had a good time, and apparently, it made quite an impact of Davis. When making his Make-A-Wish wish, I told him to dream a little bigger, because we could go to Utica anytime. When my mother-in-law heard about what he originally wanted to do, she called to book a three-day weekend to fulfill Davis' wish. The receptionist asked her if the booking was a special occasion, a birthday, an anniversary. My mother-in-law, Marylee, explained Davis' wish and booked the room. To my understanding, the resort managers and/or owners called her back and offered the cabin to us as a gift. It weekend was booked months ago, and a great deal of prayer went into making sure Davis - and everyone - was well enough to go.
We had an amazing time. With the cold temps outside and snow all over the ground, it was easy to buy into the "snowed in" excuse. The kids (and us adults, really) played a lot of Wii. We managed to pass the time playing board games and reading (I read two novels in three days! New record since college.). We ate in every meal, and then we ate some more. We were on constant graze. The kids put on a small play, which Davis and his cousin Cora wrote. We took the kids up to the indoor water park and amusement park for a bit each day. Davis couldn't go, but he didn't seem to mind too much. We somehow managed to feed and bathe and entertain fifteen people for nearly three days. Great time, great memories.
This afternoon, Davis spent a couple of hours with his buddies. I don't care how sick he feels or how tired he is, he always manages to rustle up the energy to hang out. He needs to hang out with his friends; it takes him immediately away from the cancer world.
Tonight brings routine. Homework, band practice, reading, supper, showers, and bed. Despite having to take the steroid this week (upsets his stomach), Davis has a week off. He will have to get a CBC and CMP on Thursday. This is to check to see if he needs any transfusions and to see where his ANC is. Other than that, there is no other work scheduled. Next Friday, Davis will have a big day of chemo. He will receive another spinal tap, more IV chemo, and he will start the Ara-C again. This is an IV chemo given over thirty minutes four days in a a row. His port will stay accessed all of those days. We aren't sure yet if the doctors will require or want us to stay in St. Louis (might depend on his ANC) or if we will be allowed to administer the chemo at home and then have a Lincoln Land Peds Nurse de-access him on Monday, which we have done before. Davis tolerated the Ara-C well when he received it in September, so I am hoping and praying that he will do the same this time. From what I have been told, Ara-C is very hard on children and many are hospitalized from it. We have been blessed that this has not been the case for us.
We continue to thank you for your positive thoughts and prayers. I know I have stated this so many times that it is nearly cliche, but we really couldn't do this without the support we have received. We continue to pray that Davis remains healthy despite the low ANC. We pray against short term and long term side effects. We pray that his organs aren't damaged by the chemo being pumped into his body. We pray that he is healed completely and forever - no relapses ever. We thank you for thinking of us and praying with us.
Lord willing, we are looking forward to another ordinary week.
We will keep you posted.
We enjoyed the routine of last week. Davis did fight us some on taking his medication. I thought we were beyond that, but I guess I was wrong. Sometimes I think he is too smart and logical for his own good. He has an amazing understanding of the needs for each of his medications. If he hasn't had the chemotherapy medication, Vincristine, in awhile, he doesn't think that he needs to take the side-effects medication, Neurontin. And while that makes sense, there are side-effects of the side-effects medication if he doesn't continue with the proper dosage at the proper times. And since he hasn't felt any of the side-effects of the side-effects medication, he doesn't think he is going to have any. Coining it as frustrating is significantly understating it.
Kyle took Davis to his chemo appointment on Friday. This past week's chemo was an easy one. No chemo is really easy, but this week's chemo took less than an hour to receive. Davis' counts were drawn in the clinic, and I received those later in the day on Friday. We had been warned that his counts would eventually drop, so it was no surprise when we got the read on Friday. Davis' white cells had dropped to 1.3 (5 to 10 is normal). His hemoglobin was still pretty good at 9.4 (transfused around 7, unless he is sick, and then transfused around 8). His platelets remained pretty strong. The biggest hit was to his ANC (immune system). It went from over 4000 last week to 494, which means he is neutropenic. Neutropenic is an immune system under 500 (above 1500 is healthy); being neutropenic puts Davis at a critical risk for infection/illness. That doesn't necessarily mean that he is going to get sick; it means that if he catches a viral or bacterial infection somewhere (cold and flu season), his body doesn't have the ability to fight it off. He would be hospitalized and the doctors use medication combos to ease some of the burden from his body. We are constantly trying to find the balance of allowing him the freedom of living a normal ten-year-old life and fighting the urge to wrap him in a bubble suit and keeping him in quarantine for as long as it takes.
The weekend came as a nice surprise. But let me back up a little. When Davis was approached about making a wish through the Make-A-Wish Foundation, his very first wish idea was to stay at a cabin we had stayed in a couple summers ago in Utica, Illinois. He thought that was one of the best vacations he had been on, and he wanted to do it again. Two and a half years ago, the entire Coffey family (Kyle's parents, Kyle's sister and her family, Kyle's brother and his family, and us) rented a cabin in Utica. There was plenty to do at the resort, and when we tired of that, we could head down the road and hike in the Starved Rock State Park. We had a good time, and apparently, it made quite an impact of Davis. When making his Make-A-Wish wish, I told him to dream a little bigger, because we could go to Utica anytime. When my mother-in-law heard about what he originally wanted to do, she called to book a three-day weekend to fulfill Davis' wish. The receptionist asked her if the booking was a special occasion, a birthday, an anniversary. My mother-in-law, Marylee, explained Davis' wish and booked the room. To my understanding, the resort managers and/or owners called her back and offered the cabin to us as a gift. It weekend was booked months ago, and a great deal of prayer went into making sure Davis - and everyone - was well enough to go.
We had an amazing time. With the cold temps outside and snow all over the ground, it was easy to buy into the "snowed in" excuse. The kids (and us adults, really) played a lot of Wii. We managed to pass the time playing board games and reading (I read two novels in three days! New record since college.). We ate in every meal, and then we ate some more. We were on constant graze. The kids put on a small play, which Davis and his cousin Cora wrote. We took the kids up to the indoor water park and amusement park for a bit each day. Davis couldn't go, but he didn't seem to mind too much. We somehow managed to feed and bathe and entertain fifteen people for nearly three days. Great time, great memories.
This afternoon, Davis spent a couple of hours with his buddies. I don't care how sick he feels or how tired he is, he always manages to rustle up the energy to hang out. He needs to hang out with his friends; it takes him immediately away from the cancer world.
Tonight brings routine. Homework, band practice, reading, supper, showers, and bed. Despite having to take the steroid this week (upsets his stomach), Davis has a week off. He will have to get a CBC and CMP on Thursday. This is to check to see if he needs any transfusions and to see where his ANC is. Other than that, there is no other work scheduled. Next Friday, Davis will have a big day of chemo. He will receive another spinal tap, more IV chemo, and he will start the Ara-C again. This is an IV chemo given over thirty minutes four days in a a row. His port will stay accessed all of those days. We aren't sure yet if the doctors will require or want us to stay in St. Louis (might depend on his ANC) or if we will be allowed to administer the chemo at home and then have a Lincoln Land Peds Nurse de-access him on Monday, which we have done before. Davis tolerated the Ara-C well when he received it in September, so I am hoping and praying that he will do the same this time. From what I have been told, Ara-C is very hard on children and many are hospitalized from it. We have been blessed that this has not been the case for us.
We continue to thank you for your positive thoughts and prayers. I know I have stated this so many times that it is nearly cliche, but we really couldn't do this without the support we have received. We continue to pray that Davis remains healthy despite the low ANC. We pray against short term and long term side effects. We pray that his organs aren't damaged by the chemo being pumped into his body. We pray that he is healed completely and forever - no relapses ever. We thank you for thinking of us and praying with us.
Lord willing, we are looking forward to another ordinary week.
We will keep you posted.
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| teeth cleaning time. davis will skip out on the dentist (unless a toothache occurs) until april. in order for davis to get his teeth cleaned, he has to take additional antibiotics and have a CBC to see where his ANC is. his ANC has to be high. there is high risk for infection otherwise. |
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| something about the first real snowfall that makes a boy smile. |
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| i love this picture. what a beautiful view. the park . . . and the boy. |
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| another gorgeous smile. he looks so healthy here. he's hanging out in the chemo lounge waiting on his chemo. |
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| Utica. this was the view from the back of our cabin. i'm not a fan of winter, but i can't deny how serene the view was. |
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| well, here we are sporting our team davis pride! |
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| i can't believe davis and annakate are holding hands unprompted in this picture. this never happens. |
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| a typical moment in the cabin. i think this is super mario bros. all four players. kyle is stretching out and getting ready to run. |
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