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

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.

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.

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.

practice. practice. practice.

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.

happy fish

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.

I hope that Annakate doesn't adopt my OCD habit
of ironing everything. I caught her ironing washcloths for fun.

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.

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.

science homework.

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).

my poor baby is miserable in this picture

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.

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.

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.

something about the first real snowfall that makes
a boy smile. 

i love this picture. what a beautiful view. the park . . . and the boy.

another gorgeous smile. he looks so healthy here. he's hanging
out in the chemo lounge waiting on his chemo.

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.

well, here we are sporting our team davis pride!

i can't believe davis and annakate are
holding hands unprompted in this picture.
this never happens.

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.

Back into the Routine

01/10/2012: 9:52 AM

It has been pretty uneventful here. Thank goodness. 

Since Davis' ANC (immune system) was high on Friday, we continued our normal routine over the weekend. It seems that we have adjusted to our school routine quite quickly, and evenings are already consumed with supper, homework or reading, and showers before bed. Just thinking about how normal it all is makes me smile.

Davis met with a new psychologist yesterday. I am confident that we have found a good fit for Davis. Davis needs help overcoming his anxiety of swallowing pills. And I know to most of us pill swallowing seems like nothing, but not to Davis. It seems we have tried everything: pill glide, sprinkles, ice chips, flooding the mouth with water, throwing a pill in with food ready to be swallowed . . . He just can't or won't do it. The doctors have made it clear that Davis will be on medication for quite some time, so the sooner he gets used to swallowing pills, the better. And those of you who have or ever worked with children know that fears and worries that seem so trivial to us are very real and life-impacting in their eyes.

We just feel so blessed that Davis is doing so well. We know that this first 6 1/2 months of chemo are the hardest, and we know that every family has their share of ups and downs, but I feel that we have had more ups than downs. We know of children who spend more time in the hospital than out of it; we know of children who are tutored or home-schooled because they are not well enough to go or the school doesn't accommodate them to go (in terms of keeping them healthy). We know of families that long after diagnosis are still awaiting answers - still frustrated because treatment isn't going as planned. We are thankful, grateful, blessed.

yucky steroids. i took this picture to show how much
hair growth he had in the three weeks he had off from chemo.

Davis will have chemo on Friday. It will be an easy day in clinic because the two chemo meds he is scheduled to get take about thirty minutes total to receive. He will also have to start the Dexamethasone steroid again. With that steroid, he is on one week, off the next, on again. But it appears that this should be the last week for this steroid for now. Davis has struggled with the steroids. They cause a great deal of nausea, acid reflux, and irritability/mood swings. He has additional medicine he can take for the nausea and acid reflux, which he hates taking, but there is nothing that can be done for the mood swings. I often remind myself that this too shall pass, because there are times that the whole family is miserable from the steroids.

We continue to pray for Davis' complete healing. Each day is one day closer to being clinically healed. We thank you always for your positive thoughts and prayers. You truly are the best support group around. We are surrounded by the most devoted and compassionate family and friends in the most thoughtful community.

As your faith is strengthened you will find that there is no longer the need to have a sense of control, that things will flow as they will, and that you will flow with them, to your great delight and benefit. Emmanuel

We will keep you posted.

The Benefit of Steroids

01/06/2012: 8:30 PM

Davis is adjusting to being back on a full chemo regimen. The steroid that he is on, Dexamethasone, has caused a great deal of nausea. His face has filled out a bit (often referred to as moon face), but I like it because he looks less gaunt.

He has been off to a rocky start heading back to school. He went late on Wednesday, took a nap at school on Thursday, and stayed home (felt sick in the morning and had to leave for chemo at 11:00 AM) today. I am hoping that next week will be more consistent.

Davis had chemo today. It was a quick visit. He received two chemo treatments via IV (port) push. His weight has declined just a tad: 62 pounds. What surprised us the most was that his counts are awesome. We are aware that many of the chemo meds that he is on now cause count drops, so we were expecting Davis to be neutropenic (ANC below 500). What we didn't know was that the Dexamethasone that Davis has been on increases counts, so we are not seeing the count drop like we were anticipating. Davis' white blood cells are the highest they have been since I can remember at 4.7, and his ANC (immune system) is 4183 (normal is over 1500).  Yay! 

The doctors are still tracking Davis' kidney and liver function.  He seems to have recovered from his incredibly low calcium and protein reads from October and November. And a month or two ago, we were seeing some abnormal test results in his liver function, and now it seems that the CMP is reflecting some abnormal test results in his kidney function. However, "abnormal" is relative. The levels are completing normal and expected for the treatments he has received. The doctors use the CMP results to modify the chemo doses if necessary, and so far, Davis hasn't had to have doses modified for problems with kidney and/or liver function. I still pray that the medications he is receiving don't do long-term damage to his organs.

Well, it seems that the three-week break from chemo allowed for some time for Davis' hair to begin to grow back. Many of the chemo meds that Davis started last week cause hair loss, and we have already started to see the long hair that he had kept for so long start to fall out. We are not sure if the new growth will stay or how much of the longer hair will go.  Thankfully, Davis doesn't seem to mind anymore.

We are to meet with a new psychologist on Monday. Davis will be on medication for the next 2 1/2 years - and maybe longer - and he still can't swallow a pill. Brain block. We are hoping that Davis is willing to work with the psychologist to eventually overcome this pill-swallowing phobia. In the meanwhile, we will continue to use liquid medication and crush pills when liquid medication is not available.

Davis will head back to St. Louis on Friday for another round of chemo. We are praying that Davis keeps tolerating the chemo well and that his counts stay strong.

I am working on the little video with the Team Davis pictures that have been sent to me. If you haven't and still want to, there is time. You can send them to me via facebook or my email at abcoffey77@gmail.com. I think he is going to love it.

We appreciate all of the support, love, and prayers that have been sent our way. God's goodness and your encouragement seems to keep us moving forward with our heads held high and smiles on our faces. We still appreciate the positive thoughts and prayers, because there are still so many worries now and ahead.

My students know well that I am quite a fan of quotes. I spend a great deal of time looking for the perfect quote to write on my board each day. Perfect for the kids who needed to read and ponder it. I miss that. When Davis was adjusting to his new circumstances after diagnosis, I would write a quote or scripture on a post-it every day and add it to his wall by his bed. I never knew if he read them or not until he quoted one to me many weeks later. I got away from adding them to his wall, but I am going to take it up again. Sometimes the best wisdom are the words of someone else. I figured this month I would add a quote to the blog when I can. 

Here is the first one I put on his wall:

We cannot direct the wind but we can adjust the sails. Author Unknown

We will keep you posted.

I tried to throw some pictures on here, but something wasn't working properly. I will be sure to add the pics from the last couple days to the next blog entry.

Another Round of Peg Shots Done

01/03/2012: 1:30 PM

We went to the lab at Sarah Bush yesterday to determine if Davis would need a platelet transfusion. His platelets have to be over 75 in order to receive the chemo Peg shots in his legs. On Friday, his platelets were 78. 

The CBC results were fantastic. His white blood cells were up from 2.0 to 3.8, his hemoglobin was up from 7.8 to 10 (thanks to the blood transfusion on Friday), and his platelets were 83. His ANC (immune system) took the biggest leap coming up to 3280 from 800.

Norms. I know that if you aren't living by counts every day, you may not know what normal is and the above numbers might not make sense. Healthy children: hemoglobin (11-13), Platelets (150-450), white blood cells (5.0-10.0), ANC (greater than 1500 and anything under 500 is considered critical).

Davis did quite well with the shots today. He complains that they burn horrifically. Well, the bright side is that he won't have to have another set of leg shots for 38 days.

He lost four ounces, but that's nothing.

We will head back for more chemo on Friday. Until then, we will be spending some time getting back into school mode and our routine.

We will keep you posted.

Happy New Year!

01/01/2012: 4:45 PM

Happy New Year! 

Annakate recovered from the tummy flu and no one managed to get it from her. The rest of the week was calm and relaxing.

The highlights . . . .

On Wednesday, a few of my former students stopped over for a visit. We had a great time visiting. I am not sure if they were expecting to get their play on, but they sure did. Annakate kept them busy playing with her, and they even got up and played on the Wii a bit. Definitely a fun time. I am so fortunate to work with such good students who grow up and turn into such great friends.

On Thursday, we headed down to St. Louis a day early for a little mini-vacation. We ate at one of the family's favorite restaurant, and the kids swam at the hotel.  It was pretty uneventful, but the get-away was nice.

Davis had to go to clinic early on Friday because his hemoglobin had dropped to 7.5, and it needs to be over 8.0 for chemo. His white count had jumped from 1.2 to 2.0, and his platelets were 78. They have to be over 75 for chemo. His ANC (immune system) had to be over 750 for chemo, and it was 800.  As you can see, he barely made counts for chemo. Davis had a blood transfusion and received two chemo medications via port. The transfusion, chemo, and doctor's visit took 3 1/2 hours. We were a bit late for his spinal appointment. They had him back in a procedure room and under anesthesia in no time. Davis has to lie flat for an hour after the procedure to allow the methotrexate to circulate properly in his central nervous system and brain and to reduce the potential for a spinal migraine. Davis receives a bolus (bag of fluids) after his spinals to reduce spinal migraines as well.  (He has had them in the past.) When Davis was released for the day, it was nearly 3:30 PM.  A long day.

Fantastic news!  You are not going to believe this! Davis was off of chemo for three weeks, and in that time, he gained 9.8 lbs. He weighed in at 62.8 pounds!  We have dodged a feeding tube, thank goodness. The doctors would really like to see him at 75 pounds, but 62 is a good start. Davis will be on and off some steroids the next few weeks, so hopefully the steroids will encourage some healthy eating too. What a difference nine pounds makes. He looks healthier - still pale, but healthier.

We met with both our Fellow (oncology resident) and overseeing consultant physician on Friday. Dr. Bernardski, the consultant physician, informed us that this phase, the delayed intensification, can be a bit brutal. He told us that Davis would be neutropenic (critical or no immune system) for most of the next couple of months, and fevers, hospital stays, and transfusions were common. Crowds and public places (school being the exception) need to be avoided once again. We were told to treat this phase much like the first phase, induction.

Saturday was peaceful. We attended our New Year's Eve service at church. We sit in the top of the rise section where no one sits. We can avoid the crowd (Davis wears his mask) and I find it to be much warmer up there. After the service, we came home. It is the first year in many that my family was awake to welcome the new year. I chuckle a bit because I ran into my room to wish Kyle and Davis a happy new year, and they were snuggled in bed watching the movie "Anaconda". I guess it is only fitting after watching "Jaws" on Christmas.

Davis will have blood work tomorrow. We won't know the results until Tuesday, because Children's in closed on Monday. The blood work will determine if Davis will need a platelet transfusion on Tuesday (it is believed that he will). Tuesday, he is scheduled to get a platelet transfusion if needed and the Pegs shots in his legs. I am hoping that this will be less painful because of his weight gain, but the dosage continues to increase, so the weight gain will probably make little difference.

The kids go back to school on Wednesday, and Davis will have more chemo on Friday. His counts are to tank or wipe out around Friday or next weekend, so we will be watching counts closely.

Looking back, we had a marvelous December. We pray that the good health and blessings continue. I have no doubt that this year will provide more opportunities and lessons for us to grow as a family and as individuals. You know, cancer is something that I would never wish on anyone, let alone my baby boy, but we have been bettered by this experience, and for that, I am grateful. And I am pleased and proud that we haven't let cancer shake us to our core or break our spirits. Had it not been for cancer, we would have never fully appreciated the power of prayer, the bond of family, and the uplifting support from friends and community.

We still appreciate your prayers and thoughts. I am praying every sickness and fever off Davis already. I know what the doctors have said about this round, but I also know that Davis has done better than most. We still pray against the short term (mouth sores, hair loss, count drop, etc) and long term (heart, liver, kidney damage; secondary cancer) side effects and relapses.

May God richly bless you with good health and precious time this year. May we all get the to heart of what really matters in 2012.

Every tomorrow has two handles. We can take hold of it by the handle of anxiety, or by the handle of faith. ~Author Unknown
Do not be afraid of tomorrow; for God is already there. ~Author Unknown

Lamentations 3:22-24 (NIV): Because of the LORD’s great love we are not consumed, for his compassions never fail. They are new every morning; great is your faithfulness. I say to myself, “The LORD is my portion; therefore I will wait for him.”

sitting still long enough for a picture

new year's eve service

depositing Christmas money at the bank

acting silly with ninja monkey. they have matching caps.

Davis' doctor gave him a bunch of dreidels for Christmas.

coloring in clinic during blood transfusion

not so lucky during BCB draw. four fingers
later, he was finished.

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