Allergic Reaction

2/18/2012: 12:02 PM

It has been an eventful last couple of days.

Tuesday evening, Annakate was complaining of ear pain. We headed to the doctor's office on Wednesday (third one in three months), and an exam and throat culture later, we were told that Annakate had strep throat. I was surprised because she didn't have the classic systems that we were used to seeing: sore throat, fever, etc. Needless to say, Annakate was stuck at home for a couple of days until the antibiotic kicked in, and Davis was shipped off to Grandma and Grandpa Coffey's for the night. We have found that it is easier to send him away when Annakate is sick with something contagious. That gives her the freedom to leave her bedroom and me the time to clean and sterilize.

Annakate at the doctor's office. This sweet, little girl
doesn't look sick, does she?

Davis and I headed over to Sarah Bush to get his counts on Thursday. The Ara-C chemo that he was on the week prior really kicks the snot out of his blood counts. His white count had dropped to 0.4 (healthy kids are between 5 and 10) making his ANC (immune system count) 208 (healthy kids are above 1500), which means he is at a critical risk for infection (neutropenic) if he were to pick up a bacteria or virus. The ANC can fluctuate rather quickly. On Monday, his ANC was over 1600, and by Thursday, it was down to 208. Hopefully, it is on the climb again. We also found out that his platelets had dropped to 11 (healthy kids run between 150-450), so he was scheduled to have a platelet transfusion on Friday.

The plan in the clinic on Friday was to give Davis his platelet transfusion, his Vincristine (IV push chemo), his Peg shots, and them come home. Two hours max. Other than the Peg shot leg pain, it was supposed to be a pretty easy, routine chemo day.

You know, if it wasn't for the generosity of donors taking their time and undergoing the uncomfortableness of donating blood, my son (and so many other children fighting blood cancers and other types of cancer) would die. I know that sounds so blunt and drastic, but it is true. I think about how cliche the slogan "Donate blood. It saves lives." has become, but I have seen first hand how the anonymous blood donations of strangers has kept my son living. I know that I will continue to donate as long as I am physically able, and I will do it for Davis and the other children in similar situations who depend on it to survive.

Davis' platelets from the Red Cross

Davis was hooked up to his platelets. Occasionally, he has to be given Benadryl because sometimes platelets make him sneeze. Weird, huh. Davis' doctor was never convinced that it was a true allergy, but his nurse believed otherwise. I know it sounds crazy to be allergic to blood and platelet products. People aren't actually allergic to the blood or platelets. They are allergic to the antibodies that are found in the blood and platelets. Since every donor is different, there are different levels of antibodies in each unit of blood or platelets. And that can be problematic for some.

Beginning of the platelet transfusion. Platelet
transfusion #5 or #6, I think.

Davis received a platelet transfusion last Friday, and all was well.  There was no sneezing, no reaction of any kind. Yesterday was different. Ten minutes or so into his platelet transfusion, Davis began to sneeze and snot. We have seen this before (although an unusual allergic reaction to platelets), so we were not alarmed. The nurse ordered him some liquid Benadryl to take. After his first dose of Benadryl, the situation changed very quickly. Davis started complaining that his back was itching. The nurse and a nurse practitioner kept examining him. His blood pressure, temperature, and oxygen was monitored. By the time his second dose of Benadryl was taken (15-20 minutes later) and the platelet transfusion was suspended, Davis' lips and eyelids were swollen, and he could no longer speak (He had lost his voice). It was decided then that the allergic reaction was severe. Although his oxygen levels were still strong, the medical staff didn't want Davis to become anaphylatic. Davis received an epi-pen injection, medicated (albuteral) oxygen, and hydrocortisone via his port in a matter of minutes. To be honest, there was very little time to feel any emotions. Plus, the medical staff was so diligent; it appeared they had everything under control the entire time. After twenty minutes had passed, Davis was his old self again. In the future, Davis will be pre-medicated with Benadryl via his port before any platelet transfusion.

onset of swelling

examination and monitoring

suspension of platelets moments before epi-pen. You wouldn't believe
that there were four grown women hovering over him from
behind a curtain in this shot.

breathing treatment

The allergic reaction definitely took a huge chunk of time out of our day. He was given his Vincristine and Peg shots a while after his reaction. We had to wait another hour after the Peg shots to see if he was going to have an allergic reaction to them. Actually, the wait was a formality. Davis was so full of antihistamine blockers, there was no way he was going to have an allergic reaction to the Peg shots. For sure, he was pre-medicated for those. To the best of our knowledge, the Peg shots he received Friday are supposed to be his very last. Yay! The doctor was pretty sure there were no Peg shots in Maintenance; however, she is more familiar with the B-cell Leukemia roadmap than she is with the T-cell Leukemia roadmap, so she may have misspoken. Hopefully not.

There was still quite a bit of inflammation and swelling at the epi-pen injection site when we were free to go. We had to keep an eye on it and make sure it went away, and with time, it did. We finally made it back to Mattoon a little after 6 PM, three hours later than expected. Davis slept all the way home - a blessing from the Benadryl.

Visiting with friends. Our friends from Florida were home for the
weekend, and Davis seriously objected when we considered skipping our evening with them.
It makes sense now. What young man wouldn't want to keep these pretty little ladies company?

Davis is feeling a tad bit crummy this morning. No, that's mildly putting it. He is a grouch. I guess he has earned a little grouchiness. Hopefully, I can convince him a nap will help his mood. Next Friday will be Davis' last chemo treatment before the Maintenance Phase begins. He will have a week or two off from chemo in between the phases in order to let his counts build. The next phase cannot be started until his ANC is 750 and his platelets are 75 (built back on their own, no transfusions). I know the road ahead is still very long and difficult, but it brings me such joy to look back and see what success we have had beating cancer the last eight months.

God continues to keep His hand on Davis, and we continue to pray for complete healing and good health until his very last treatment and beyond. We feel so blessed.

We will keep you posted.

No More Ara-C! Yay!

2/14/2012:  12:20 PM

Happy Valentine's Day!

Warning . . . This may be a long one. I just feel like I am doing a little bit of catch up.

Kyle did an amazing job while I took to some warmer weather for a little R and R. The cruise was wonderful. Kim and I managed to get plenty of physical activity. One day, we kayaked the mangrove estuary where the Gulf and Atlantic Ocean meet. Another day, we rock climbed, repelled, zip lined, and snorkeled (what a workout!). That last time Kim and I were in Florida together was seventeen years ago, so the get-away was nice, and the homecoming was even better.

Super Bowl Party. We ate and left. We didn't watch any of the game.
I'm partial to the Titans, the Tri-County Titans, that is. :)

Rock climbing and repelling. Boy, was it hot!

Friday ended up being a very long day for Davis and Kyle. The family went down on Thursday night and stayed in a hotel because Davis had to be in clinic early. He was scheduled to receive chemo via port and chemo via spinal, but it was also determined that he needed a unit of platelets and two units of packed red blood cells. The blood transfusion added an additional four hours to the day alone. Because of the time crunch, Kathy, our clinic nurse, actually came down with Davis' Ara-C chemo and administered it in his port while he was still under anesthesia after his spinal in recovery.

I had mentioned a couple of updates ago that Annakate had developed a swollen lymph node on her neck and that we were doing a "watch and wait" with her after taking her to the pediatrician. Because of the concern, she was given an examination by Davis' pediatric oncologist. The oncologist agrees with Annakate's pediatrician that there is nothing for which to be alarmed. What a sigh of relief.

My mother and step-father drove down to St. Louis and looked after Annakate while Davis was in clinic. They spent the weekend watching the kids while we attended our church's couples marriage retreat. It wasn't ideal for us to bring our kids along on a marriage retreat, but with Kyle administering
the four-day Ara-C chemo, it was the only way to make it work. My mom and step-dad were going to take the kids home on Saturday so that Davis could be ready for his 5th grade band concert that evening, but Davis wasn't feeling up to par. We thought it best to keep the kids with us.

marriage retreat

It was a good we did.  Saturday night, the Ara-C chemo froze in the refrigerator. Refrigerator malfunction. Kyle called Davis' doctor who happened to be on call, and she had to order two new doses. (Frozen chemo = ruined chemo). The pharmaceutical company had to make it, and we arranged to pick it up at Children's around noon. We have to watch the time, because there is a window of time that the chemo has to be administered. It has to be administered around the same time everyday. Between the frozen chemo and our arrival at Children's, Davis developed a low grade fever. The doctor directed us to the ER, where a CBC would determine Davis' ANC. If his ANC was below 500, Davis would be admitted and transferred to the 9th floor. If it was above 500, Davis would be given a broad spectrum antibiotic and sent home. Five hours later, we knew his ANC was 675. Seven hours in the ER, we were finally given discharge papers.

Kyle is doing a saline flush before he discovers the chemo is
frozen.

The Ara-C causes fever; however, there is really never any good way to know if the fever is being caused by Ara-C, a viral or bacterial infection, or a line (port) infection, so the doctors always cautiously treat any fever.

Poor Annakate. Can you imagine a healthy, rambunctious eight-year-old sitting in a hospital ER for seven hours and then sitting in the car for another three?  How boring.  She makes me so proud. She did such a good job hanging out and complaining very little.

Annakate is making the best of the all-day SLCH ER trip.

Both Kyle and the ER nurse struggled putting fluids into the port. It was difficult to push the syringe. This issue, the impending snow, and Davis' low grade fever concluded with another drive to St. Louis yesterday (Monday). Our clinic nurse, Kathy, discovered that it was difficult to push the meds. She gave the needle and little wiggle. Problem solved. Apparently, the needle had lodged against the side of the Davis' port wall restricting the flow of fluids. Davis received his very last dose of Ara-C in clinic. We were informed that Ara-C is not on the maintenance roadmap. This is just one more step that makes maintenance more of a reality.

Last Ara-C!  How can you not smile?

Davis is still running a low-grade fever. We are monitoring it closely. Cultures taken Sunday and yesterday in lab have not grown any infections. His ANC on Sunday was 675, and yesterday it was 1115. Wow. The climbing ANC nearly guarantees that Davis won't need to stay in the hospital to wait out the fever. Despite on-and-off fever and a horrible headache (both side effects of Ara-C), Davis is off to school today. He was feeling a bit overwhelmed about falling behind, and he didn't want to miss the Valentine's party.

Davis will have another CBC on Thursday. His counts are being monitored closely because the combination of Ara-C and methotrexate can cause him to be neutropenic (ANC

We have this Friday and next Friday, and then we will have completed the delayed intensification phase (road map). Wahoo!  Yay!!  We will have a short break, and then Davis will start the long and steady maintenance road map  that will run 2 1/2 years. Treatments will cut back from once a week to once or twice a month. Although he will still be at risk for infection because the port is staying in, he will be able to live a more normal life (if there is such a thing anymore). 

Radio Interview

This morning, I had a chance to partake in a radio interview to promote an upcoming St. Louis area Easter egg hunt sponsored by the Gateway chapter of LLS (Leukemia and Lymphoma Society) and several other organizations. The interview was to inform people about the statistics and signs of blood cancers (Leukemia, Lymphomas, Myelomas). The panel consisted of the the deejay; Debbie Kersting, the executive director of LLS; Dr. Huang, the pediatric hematology/oncology department director; and myself sharing information about our family's journey. If you are an early riser and wish to listen to the thirty minute talk show, feel free to stream it on your computer. Here is the information I was provided.

The interview was with radio personality Kristi Carson. The program will run at the following times:
KHITS 96 on Sunday, March 4 @ 5 am
KSHE 95 on Sunday, February 26 @ 6 am
The Point 106.7 on Sunday, March 11 @ 5 am
KFTK 97.1 on Sunday, March 18 @ 5 am

All radio stations are out of the St. Louis area.

We thank you all for your love and support. We count our blessings each and every day. We continue to pray for Davis health and that soon the worst of the treatments will be behind us. We do not doubt the power of positive thought and God's healing touch. We don't have to look far or long to see how wonderful He is.

We will keep you posted.

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!! 
 

Fluids on the Go

2/4/2012: 10:18 AM

Davis is rocking his own CBC so it
doesn't clot.

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.

Beginning of fluids

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.

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.

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.

Blood transfusion.

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.

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.

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.