A Feeling Worse Than Fear

Soooo Sorry!  Apparently, I never posted this one from a couple of weeks ago.

10.8.2012: 11:00 PM

I can't remember when I last blogged or what I wrote, so I may be repeating information, and for that, I apologize.

Davis' chemo was withheld for three weeks due to low counts. During those weeks, his ANC (immune system) remained neutropenic (below 500).  We had spoken to the nurses at Children's on several occasions and were at one point getting CBCs every couple of days.  The nurses were at  a loss as to what was really causing the low counts. The best guess was the chemo had wiped out his system. Every nurse I spoke to said that the doctors would discuss the low counts with me when Davis came in for his monthly chemo appointment and check-up.

I hated what this sounded like. I refused to give in to fear. I wasn't going to worry about something that was nothing at that point.



We have watched Forest Park change from season to season from this window.

Kyle and I both went to the appointment at Children's on Friday, September 28. The nurse drew Davis blood and sent it off for a CBC. His ANC had dropped from 391 to 309. And then Dr. Schapiro stopped by for the check-up. She checked out his ankle. Davis has been limping since June. We have had a couple of x-rays, and there were no breaks evident. The next step was an MRI, but we wanted her to check it out first. She believes that his ankle pain could be contributed to extended use of chemotherapy, which has caused necrosis in his foot. I am not exactly sure what all of that means, but she didn't act like it was a big deal. She isn't concerned about his limp - only an inability to walk. We visited, we joked around, we then discussed the count drop. And then she mentioned the word relapse. It was an odd situation really. She discussed the possibility of relapse so casually, so nonchalantly. In return, my posterior remained calm, and on the inside, my mind was whirling so quickly, I nearly became physically sick right there. Relapse? Low counts can be a reflection of one of three things: chemo taking a toll on the body, an infection (usually accompanied by a fever), or relapse.

My thoughts were moving so quickly during this conversation. I remember noting that we were holding this discussion in the very same exam room we started this whole journey in in July 2011. Needless to say, my mind was near panic.

It was then I realized that feeling worse than fear: dread. The difference between July 5, 2011 and the potential outcome of this particular day was that we had already walked the road of all things cancer: radiation, hair loss, nausea, long hospital stays, masks, needles - lots of needles, etc.  Until that moment, I had nearly forgotten the long nights, my baby's tears of homesickness, the awful Peg shots, the constant cleaning and the ever-present smell of Germ-X, the transfusion after transfusion . . .

Dr. Schapiro recommended doing a blood smear sample to see if there were any cancer blasts in Davis' blood.  The blood is the last place that cancer cells show up in a Leukemia patient, but a smear is the least invasive and gives us an idea of what might be going on. Kyle was pushing for a bone marrow biopsy to be done that day. We were adamant about not wasting time if relapse is a possibility.

The blood smear came back. Dr. Schapiro invited Davis and I to take a look at it. It was awesome. Davis was in his element. He was throwing out terminology I didn't know he knew. He and Dr. Schapiro bonded over blood. You could totally tell that they were both enjoying the science lesson that Dr. Schapiro shared. She showed us his platelets, red blood cells, white cells. She showed us some Atypical lymphocytes - an indication of an infection. We examined his monocytes as well.  It was fascinating. She reminded us that Davis' blood looked good for Davis, but would look not so good compared to my healthy blood.  Luckily, I have never examined blood, so I can't judge Davis' bad blood against others. The best news: no blasts.

Last Monday night, Davis spiked a fever. 101.1. Anything over 100.4 is a trip to the ER. Kyle and I were pretty confident that Davis would be transferred to Children's since his ANC just three days earlier was 309 (Any time Davis is "f and n" (fever and neutropenic), he has to be transferred.) Kyle took Davis in while I packed our suitcases, contacted my boss, wrote lesson plans, packed Annakate, etc. A couple hours later, Kyle texted me with some amazing news. Davis' ANC was over 2000! Well, if Davis did have an infection, his immune system would try to fight it, the the increase in neutrophils. He had also been on Prednisone for a couple of days. Prednisone increases white blood cell production which causes the ANC to go up. But Kyle and I think that his jump in counts was a God thing - an answer to collective prayer. Davis was treated with a broad spectrum antibiotic and sent home. He has been feeling pretty good ever since.

Oral chemo resumed last Wednesday. We are so thankful. The longer Davis went without chemo, the higher the risk for relapse. We will do a count check towards the end of the month before his next appointment. Lord willing, the CBC will be perfect.

Things are busy around here. Davis is finally an orange belt in Taekwondo. He faithfully practices the piano and his drums every evening. I love it. He is really excited about an upcoming marching band performance. That is all he talks about.

Annakate is doing well in Taekwando too. She earned her green belt. Only five or so more to go to black belt. She really impresses me with her sparring. I watch her spar and am amazed that my little girl can kick and punch like that.


Harvest is rolling by. Kyle is making progress. I am thankful for the rain when it comes because that slows everything down a bit. With his busy harvest and my crazy work schedule (just survived a fun homecoming week), sometimes I feel that we survive the day, the week. I hate that about busy lives, but I am so grateful to be where we are now. And I catch myself often thinking, "This time last year. . ." I just don't ever want to lose sight of where we have been and how far we have come. . . not by our own devices, but by the help of God and our friends and family. I just want to be thankful and grateful always. I never want to take a day, a week, a month, a year for granted, because too soon they pass, and very easily be gone forever.

We will keep you posted.

Illinois Dream Hunt

10.28.12:  10:00 PM

Davis was blessed with a wonderful opportunity to partake in a deer hunt sponsored by the United Special Sportsman Alliance. He and eleven other children with life-threatening diseases or illnesses met in Southern Illinois to hunt. Davis and Kyle really hit it off with Davis's hunting mentor, Terry. Terry is quite a hunting enthusiast and expert and kindly donates his time. He taught Davis all sorts of things about hunting.

Davis and his hunting mentor, Terry

 

Sadly, Davis did not tag a deer this time. He did, however, bring back a gigantic goose egg and substantial bruise on his forehead. Apparently, he leaned into the scope on his last shot, and it kicked back and got him.  I am sure he won't do that again.

Today at church. Notice the bruise?

 

I want to thank the USSA for this opportunity. Davis loved the experience and is super excited about all things hunting.

Davis had chemo on Friday, and all is well.  His counts were great. His ANC (immune system) is over 2000 (Healthy kids run over 1500). He receives a breathing treatment of albuteral and Pentamadine every month when we get chemo.  This breathing treatment protects him from fungal lung infections and fungal and profound pneumonias, which people receiving chemo are prone. However, this time, he didn't receive Pentamadine. He was switched back to an oral pill, Septra. Apparently, there is a drug shortage of Pentamadine and Children's has been unable to get a hold of it. I am hoping that the shortage is short-lived. I like the Pentamadine because it is one less medication that he has to take on a regular basis.  

The next chemo date is scheduled the day before Thanksgiving. Davis will be receiving another spinal of Methotrexate.

I downloaded pictures from Davis's camera this evening to get the hunting pictures. Davis had over 180 pictures sitting on it. It was quite a gold mine of sorts. I enjoyed looking at the things he feels worthy of capturing on camera. I thought I would share some of them. Keep in mind, these pictures range over a ten-month period and were taken by eleven-year-olds.



a weigh-in in clinic around March. My, how much
he has changed. Counting our blessings!

In the Capital Building in July

I love this picture!  He cracks me up! 
Washington, DC

He took this one last week at Fox Ridge. The 6th graders at his
school went as part of a rewards program. Beautiful, isn't it?

Goofing around at Fox Ridge.

Thanks for the continued prayers and support.

 We will keep you posted.

Saturday Blood Boost

9/22/12:  5:00 PM

Well, Davis had a week off from chemo because of low counts. He was retested on Wednesday, and his counts were still low.  The team decided it would be best for Davis to postpone his chemo until Monday. On Monday, he is set to have another CBC and CMP. This will determine if his counts have increased enough to resume chemo. 

 

 

Davis has been experiencing some fatigue, headaches. and dizziness. We can naturally assume this is related to the low counts. Since we have been down this road before, Kyle and I decided it was best to bring Davis down to St. Louis today for a transfusion. The transfusion will eliminate the symptoms and will save us a trip down here on Monday. We are also hoping that if his counts come up, he won't need to postpone his chemo given in clinic on this coming Friday.

 

It has been a very long time since we have needed to be in the SLCH ER. There is such a comforting sorrow being here. Familiar. It's depressing thinking of why we have been here, but the times we have spent with one another -- just being together -- have been beyond wonderful.

 

Our day started at 9:30 this morning. When we hit St. Louis, we attempted to avoid the stand-still traffic (part of the interstate is closed) by detouring through town. What a mistake! There was a parade taking place, which further detoured our route, and I am pretty sure we hit every stop light along the way. We finally checked in a little after noon, and we have about an hour's wait on Davis' transfusion. (5 hours and 36 minutes into our ER visit)

The CBC here in the ER revealed that Davis' counts are going up. His red blood cells were at 7.9 on Wednesday, and now he is over 8.0 (before transfusion). His platelets were 43 and are now over 50. The blood transfusion will give him the boost that he needs to feel like himself again.

It really is crazy how something as simple as a blood transfusion eats away at eight or more hours of the day. Hopefully, we will be released from here in time for a late supper. Davis is eager for Kyle to try a restaurant on The Hill that Davis and I ate at a few months ago. Eating out is a nice perk for the trip.

If all goes as planned, Davis will have a blood test on Monday. Hopefully, his counts will have increased significantly, and his chemo will be resumed on Monday evening. With the increase in his counts, Davis will head back down to St. Louis on Friday for his monthly check-up, in-clinic chemo, and breathing treatment.

You know, just today, we were talking to the ER nurse about how blessed we are. Davis hasn't received a transfusion for the last six months. He has done so well. And as far as what caused the count drop now, the doctors believe it was a combination of the chemo and a virus. Their best guess is that Davis' immune system wasn't strong enough to fight off the chemo and a virus causing the neutropenia and anemia. This is expected. We just count our blessings because Davis is doing so well, and his body (and immune system) is still responding to the chemo and is growing stronger.

We will keep you posted.

A Bloody Nose and a Bucket of Tears

9/11/2012:  10:27 AM

 

Another great week.  I am a junior class sponsor this year, so I am "lucky" to work all of the home football games. This Friday led to quite an adventure. A storm popped up before game time. We were set to ride it out in the concession stand until we received word to take shelter because of a tornado warning. Soaked to the bones, we (a handful of teachers and students) ended up spending the evening in a hot gym.  The game was finally called off just before 8:30 pm, nearly three hours after we had arrived. Despite the circumstances, it was pretty fun just hanging around and visiting with everyone. 

 

The horrible weather gave way to a beautiful Saturday. The game was re-scheduled, and our team won. Yay! Davis spent the night with one of his friends, Wade, and Annakate took advantage of having Davis out of the house by having a slumber party of her own.

Yesterday, Anna had an adenoidectomy and a turbinate resection. She has never been able to properly breathe through her nose. For years, she has been on a variety of medication to treat this problem: allergy pills, nose sprays, inhalers, breathing treatments, etc. We have seen quite a few doctors as well. Finally, the ears, nose, and throat specialist suggested we do this procedure. It is supposed to open the passage ways in her nose (nearly closed) and eliminate some of her allergy issues.

She was all smiles before the surgery. The doctor said the surgery has minimal side effects, and she would feel better in a matter of hours to a day. I guess I was a bit naive, because I was expecting a much different outcome after the surgery. Annakate cried a lot that she was in pain (throat pain from the breathing tube) after the surgery. The doctor assured me that the teary response was from the anesthesia. The more she cried, the more her nose bled. After the doctor removed the packing, it seemed to just run down her face. She was given morphine and codeine and was still complaining of pain.

She was finally released early afternoon, five hours after we arrived. She was complaining of sickness (stomach upset) for the first fifteen miles, so I pulled over quite a bit. It took forever to get home. And home was short-lived. Anna had to ride around with Kyle in the semi, while I took Davis to the doctor. Davis has another in-grown toenail. The doctor prescribed some antibiotics. He should be as good as new in a few days.

While Kyle was watching Anna, the upset stomach got the better of her, and she began to vomit. This continued for most of the evening. She did manage to eat a breadstick before bed and sleep for most of the night.

Annakate is feeling better today. She is eating noodles and crushed ice, and I have backed her pain medicine down. Her nose is still bleeding some, but not like it was yesterday. I am pretty sure she will feel like going to school tomorrow. Thank goodness.

I am hoping this week slows down -- way down. Both kids are on the mend, and the field work seems to be running smoothly thus far. I am still trying to find that balance of teacher, wife, and mother. Finding the balance seemed easier before Davis had cancer, or maybe I am just remembering it incorrectly. I will get there.

I know several have asked if Davis was able to go on his Make-A-Wish trip. We have not yet, but we will. Lauren, Davis' Make-A-Wish rep, has been in contact with us, and we are hashing out dates. Also, Davis' friend, Jordan (roommates with Davis last July, diagnosed a few days after us with Lymphoma) asked Davis to go on a bear hunt in Wisconsin with him through an organization called the United Special Sportsman Alliance. After being in contact with the organization, it was decided that Davis would best be suited to do a deer hunt, since he has never been hunting before. I truly can't imagine Davis shooting a deer (He has such a tender heart.), but he seems excited enough. I pray that Kyle is out of the fields and able to accompany Davis. I am not sure what good I will be in a tree stand hunting deer. If Davis enjoys this experience, it is our understanding that he will be eligible to go on the bear hunt next year. If you are interested in more information about the USSA, here's the link: www.childswish.org.

We thank you for the encouragement and prayer to this day. I love it when people walk up to us when we are out and comment on how well Davis looks and how they have been thinking and praying for us. It is amazing how many people have been touched by cancer, and how many people are truly pulling for Davis. With that being stated, please continue to pray for Cory's parents and sister. As expected, they are so broken and still struggling to make sense of life without Cory. Not a day goes by that I do not think of this family.  I can't even imagine the pain that they are going through. They need prayer.

We will keep you posted.

Another week - Another Month Down

9/3/2012:  4:05 PM

Well, we have survived another week. We are as busy as ever - light worlds away from where we were one year ago.

On Wednesday evening, Davis went to get his CBC and CMP. All was well. He had an ANC (immune system count) of 1108, which is great. The doctors want to keep his ANC between 1000 and 1500. His platelet count was a little on the low side at 72. The doctors like to keep that above 75 for procedures but don't transfuse until 10 or so. Since Davis was only shy a couple of points, they decided to keep him on schedule for his spinal. The low platelet count sure explains all of the bruises that are popping up on his body (mostly his legs).

On Friday, Davis, my mom, and I left at 5:30 AM for St. Louis. We arrived at the 9th Floor Clinic right on time for our appointment. There were several nurses wearing their Team Davis t-shirts. I just love that. Fridays in the clinic are crazy, and because of that, Davis missed his APC (ambulatory procedure center) appointment for his spinal by ninety minutes. Luckily, the clinic and the APC communicate well.

 

The clinic nurse pretreated him with Kytrel, an antinausea medication, before his spinal. This helped him tolerate the anesthesia a bit better.

Davis didn't have to wait too long for his spinal.

 

 

Davis slept for an hour. He has to lie on his slide for an hour to help prevent spinal headaches that he has been prone to getting in the past. He woke up in a surprisingly good mood. That is a rarity. 

 

Once we returned to the clinic, Davis busied himself with the Xbox Connect. There is a lot of down time between the chemo (which takes all of five minutes to push in his port) and the breathing treatment (which is done done in a special room and lasts thirty minutes). The clinic was crowded, so we found ourselves hanging out in the little play area near the back of the lounge. I am glad that Davis found something to keep him occupied. 

 

 

 

Since Davis has to fast for his procedure, we let him pick where he wants to eat afterwards. This time, he chose the Waffle House in Collinsville. He ate quite a bit, but apparently, it wasn't enough. I had to stop and get him an Arby's value meal in Vandalia because he was "starving". It rained all of the way home, but we managed to stay in front of the stormy weather.

 

 

Davis will head back at the end of September for his monthly chemo treatment. He still continues to take oral chemo every day alongside other medications. I remember how this time last year it seemed that our lives revolved around medication dosages and schedules. Now, medication is merely an inconvenience. He takes his meds without complaint and quickly now. Last year, it would take a daily fight of a small army to get him ot take his meds. Now, I can put the meds on the counter, and he takes them. NEWS FLASH:  Davis swallowed three small pills tonight!  To many of you, it may not seem like a big deal, but this little step is earth shattering in our home. Davis has a major phobia about pill swallowing. Hopefully, we have reached a turning point. We will see. We sure were whooping and a hollering here tonight though.

 

 

Every visit to clinic leaves me feeling ever more thankful and blessed. We have a wonderful community of family and friends who support us unconditionally, and we have a son who defies cancer while maintaining a normal eleven-year-old life. We are so thankful -- and amazed -- that Davis never lowered his own expectations while in the toughest throws of cancer treatment. He still brought home straight As and participated in time-crunching activities, like Band and student council. We are proud of him for setting higher expections than we require. I think he is pretty amazing.

 

 

And although life is much easier than it has been in awhile, I still ask that you pray for Davis and our family. I have no doubt that God is going to heal Davis from cancer forever; however, I still pray against relapse and organ damage daily. I pray that God makes him healthy and strong.

 

 

I am never thankful for cancer and I truly do hate cancer, but I am thankful for the opportunities brought to me by cancer. I am so thankful for the opportunity to re-direct my time towards my home and my children and husband. I am thankful for the re-focus of my priorities. A stack of essays to grade and a clean house aren't near the top of the list anymore. I am so thankful for every day with my babies, because life is so short and the their childhoods are even shorter. I am so thankful for the acquaintences that we now consider our friends. Cancer brought us closer. I am so thankful for those cancer survivors and their families who have journeyed parallel roads, because we are forever bonded by the illness that we beat. I am especially thankful for the children (and their parents) with whom Davis attends school. The kids in his class and his school never shied away from him or his sickness. They embraced him - never treating him different. Having survived my own adolescence and being a teacher, I know that some kids can be cruel to kids who are different. This has never been Davis' experience. And I know that children would not be so kind and accepting if they did not have amazing parents teaching them. This is just the tip of a great many blessings for which I am grateful. It may seem at times that I dwell on the physical and mental -- often negative -- side effects of cancer. Well, I guess there are positive, life-changing side effects as well.

 

 

We will keep you posted. 

Busy, Busy

8/26/2012: 10:44 PM

One word to sum up the week? Exhausted.

Annakate was baptized on Sunday evening. I am so proud of her.

 

School started on Monday for me and Tuesday for the kids. We sure haven't found our routine yet. I can never remember a time where starting school and shelling corn fell in the same week. I think the kids and I are feeling the effects of school.  Davis told me on Wednesday, "Mom, I think my hemoglobin is low." At first, I thought that comment was kind of funny, but then I was a bit sad. I was sad because what eleven-year-old relates the tired feeling to hemoglobin levels? I was sad because he could have been right; he has been a bit pale of as late.

First day of school

We received our first phone call from school on Friday. Davis has had a cough for some time (hopefully allergies), and was running a tiny, tiny fever. He has had a fever (not a worrisome fever; it's runs around 99.5 or so) on and off for a couple of weeks. We have talked to the oncologist, and he feels that it is a result of sinus/allergies/virus. Since the fever remains under 100.4, the oncologist said that his immune system is taking care of "it". Whatever "it" is.

Friday night, Davis and Annakate ran the Ashmore 1.5 mile evening fun run. The night race kicks off our Ashmore Day Festivities in our little village. I was really worried about Davis running this race because he still has very little muscle mass and tires easily. As fifteen minutes had passed, nearly every child had crossed the finish line. I noticed there were still two kids without times. Davis, of course, and his friend Drew. It took Davis nearly 24 minutes to round the corner by the finish line, and Drew was right there next to him. You know, I think God puts people in our lives for a reason. I really don't think that Davis would have been able to fight cancer so gracefully if he didn't have such amazing friends (and their families) who encourage him and accept him unconditionally. They have never once treated him differently because of cancer. Although not surprised, I was completely moved that Drew wouldn't think twice about forfeiting a race to keep Davis company.

 

Saturday morning . . .Parade! We were fortunate to be chosen as Grand Marshals to represent our little community. It was so much fun! The kids tossed candy at the crowd. They enjoyed that much more than gathering it.

Although he didn't place, Davis gave it all he had during the kiddie tractor pull. I am pretty sure this may be his last tractor pull. He's too big for the tractor!

 

Our church celebrated its annual "Friends Day" today. It is quite a happening, and we look forward to it every year.  Davis managed to make his way into the dunking booth. He was so tickled and excited . . . and so wet! I think he was dunked well over fifty times.  Annakate had some wet fun of her own on the water slide. And no, I don't have any pictures of her, because she was here, there, and everywhere. I couldn't get her to stand in one spot long enough.

 

 

 

Davis and I ended our Friends Day festivities early to head back to Charleston for Davis' piano recital. He played the theme from Star Wars and a song from High School Musical. I thought he did an outstanding job. He did mess up a few times, but he kept going. After he sat back down next to me, he buried his head into my arm and whispered, "I'm so embarrassed. I kept messing up." I think he's a bit hard on himself. I was very proud of him (and a bit jealous of his talent). 

 

 

Davis and I will head down to St. Louis early Friday morning for a long day of chemo. He will have a spinal this time in addition to his regular chemo and side effects meds. Once again, I ask that you pray for him. The anesthesia throws him off.  I will also be praying for a strong immune system. His persistent cough and elevated temperature could have eaten away at his ANC (immune system count). If his ANC is too low, chemo will be postponed, which prolongs everything.

 

Please pray for Annakate too. She has never been able to properly breath through her nose. That has caused a load of trouble for her. She has been on medication for it ever since I can remember, and it never seems to improve. We finally took her to a specialist. She will be having an adenoidectomy and a nasal turbinate resection in a couple of weeks. She's super nervous about it. Anesthesia and hospitals and bloody noses have never been a part of her personal world - always Davis' - and she is a bit scared. The procedure is pretty quick and mostly painless. Hopefully, she will feel much better soon. 

I know it may seem like I am always saying this, but it is true. We are so blessed. As cliche as it may sound, every day is a gift. I am astonished as to how far we have come in the last thirteen months. We had some really rough times and gobs of bad days. And even though the bitter bites of those experiences are as vivid as living them the first time, the simple beauty of life -- the days where cancer doesn't dictate our lives -- outshines them.

We will keep you posted.

School . . . Ready or Not!

8/17/2012: 7:17 PM

I love when spontaneity works out. Last Tuesday, we received some free tickets to a Cards game. We headed down to St. Louis to soak up a game before school started. It was wonderful. The seats were great, the temperatures were mild, and we treated ourselves to nachos and Dippin' Dots.

Thank you, Mike and FS, for the tickets!

My aunt was married last weekend. I am not sure how your families work, but with my family being spread out all over the country, the only real times everyone gathers together is for weddings and funerals. Obviously, weddings being preferred. The wedding was beautiful, and the fellowship with family and friends was even better.

My aunt danced with her groom for their first dance.
Davis got the second dance.

I met with Davis' teachers, the school nurse, and principal this past week. The meeting went well, and I feel better about returning to work. Davis' immune system is stronger than last year, but he is still at risk for infections. My fear is that since he looks so well and healthy and feels pretty good most of the time, others will forget that he is still taking daily and monthly chemo and that his immune system is still compromised. This might lead to more risk taking: kids not washing hands often, carelessness in covering noses and mouths when sneezing or coughing, parents sending kids who are "a little" sick to school. The teachers and nurse are going to help keep an eye on this to limit Davis' exposure to germs.

The next two weeks will prove to be an adjustment for us. I have started back to work (teacher) a couple of days ago, and the kids start school on Tuesday. Davis will ride a bus to and from school for the first time. He will have a locker with a lock (quite a challenge for him), and he will be responsible for taking his own temperature with a thermometer kept in his locker when he feels ill.  Kyle will be harvesting in a matter of days - a month earlier than normal. I think we all had forgotten about my balancing act of job and home, because we are out of groceries and there is a growing pile of laundry already. I am so thankful (and so blessed) that Kyle is an amazing team player and picks up where I left off. He has hauled the kids around all week and even did the grocery shopping this evening.

I pray this school year is uneventful. I pray the germs off of Davis for each day of the next school year. I pray that he continues to respond to the chemo. No hiccups on this journey, no fevers, no hospitalizations. God is good; I have no doubt.

We will keep you posted.