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.