Not So "Fair" After All

The past two years, Daniel had to miss the Indiana State Fair because of his back problems (caused by compression fractures in his lower back from what turned out to be osteoporosis).  This year, despite the leukemia and being deep in the midst of chemotherapy, he was feeling pretty good when the fair came around, and his uncle Tom (no the other one) was generous enough to offer to pay his way.  The staff at Riley warned us to stay away from the animal barns due to the possibility of infection, but gave us the all-clear to go.  This bothered me a lot and I really didn't want him to go.  Personally, I have no use for the fair and couldn't care less about it, but both Andrea and Daniel absolutely love it and REALLY didn't want to miss it a third year in a row.  So in the end, I caved in and let them go (I worked most of the day and then tried to get some things done at home while they were both gone with the rest of my family.

It turned out to be a rotten day for me, but Andrea and Daniel had an absolute blast on all the rides.  Monday he was worn out & pretty tired, but otherwise seemed OK.  I kept my fingers crossed, but apparently not tight enough.  But Tuesday, he was complaining about lower back pain - far down a the very base of his spine and into his hips.  He was moving pretty slowly and not feeling that well by the time he got to his regular clinic appt. on Tuesday.  The only thing they did at clinic was to draw blood and look at his cell counts.  They had all dropped drastically from the week before. Not good news, but not unexpected with this phase of chemotherapy (at least it wasn't to the hospital staff. No one had bothered to tell us that this was expected. Grrr.

By that night though, his back was completely locked up and he was in terrible pain.  His prescription pain meds helped enough for him to get a little sleep and I slept beside him on an air mattress helping him through the night with going to bathroom, getting meds, drinks, etc.  It was a long night.  But he seemed to be doing better during the day on Wed. so we didn't call the doctor, but again on Wed night, it hit him hard - much harder even than Tuesday night and even the prescription meds weren't touching the pain.  He was struggling hard with depression and hating life. We talked for a long time, I gave him the maximum dose of his meds around 12:30, hit it with both ice and heat, and eventually around 2a he drifted off to sleep in our bed where he thought the mattress was more comfortable.

Thursday we called back to Riley and explained the situation and they brought us in for an exam and X-rays.  They were clear and the doc felt that it was really just a side effect of over-doing it at the fair on Sunday (now 4 days prior).  But he was also beginning to complain of slight hearing problems, joint pains, and some mild tremors.  The doctor and we chalked it up to the fair, the pain meds, and massive psychological overload. 

By Thursday night, he was feeling better (and some stronger pain meds were working well), but he was also running a low-grade fever.  REALLY not what I wanted to see!  Thursday night we both slept downstairs again and it was a relatively uneventful night except he continues to have trouble sleeping and is still constantly hungry as he comes down off the steroids.  But the fever was not going away. It was holding fairly steady between 100-101.  101 is the threshold at which we have to take him to the hospital regardless and ANY sign of infection in an immune-compromised cancer patient is considered a medical emergency.

If you've followed our story for long, you know we're no strangers to midnight trips to the ER with fevers.  But Daniel was certainly in no mood to head back to Riley again now with a fever.  But it topped 101 earlier today (Fri) and so off we went with Daniel EXTREMELY upset over these events.

When this happens, they do blood counts again, and also take "cultures" of his blood to see whether anything grows that would indicate a bacterial or viral infection.  And if his blood counts are below a certain number (and they were), he is automatically admitted to the hospital so they can observe him, pump him with antibiotics, and wait to see what the cultures do over the next 48hrs.  You can imagine his excitement at being told he was being admitted.

There was no room available in the usual 5th floor hematology/ Oncology (called "HemOnc") ward, so they found us a room in the Stem Cell ward next door.  Because there is a risk that he has an infection, we're in a private room.  That part is nice.  I came up after a long day at work to relieve Andrea and spend the night with Daniel. This is our usual routine for admissions as Andrea has a terrible time on the chair/beds provided for parents here in the rooms.  About the time I arrived, the doctor came in to do a nasal swab (insult to injury you know for poor Daniel) and we were told that they have already seen a few cases of a new strain of Swine Flu from kids who have attended local fairs - even those who didn't visit the animal barns.  Great.  Combined with the news from the Fair that they'd sent home all the piggies that day because they too were running fevers and the Fairgrounds didn't want to risk spreading infection among the pigs (yeah, what about us humans?) I was NOT a happy camper about having caved in and let him go in the first place.  This trip to the Fair is getting more expensive by the day for our poor Daniel.

The most recent "insult" was around 10:00 or so when the nurse came in and informed me that I will now have to wear full gown, mask, and gloves any time I'm in the room with Daniel.  I honestly thought he was kidding me, but that didn't last long.  New hospital policy, you know.  It's for the sake of the other kids on the ward and that part I very much DO get.  So as I sit here sweltering and trying to type with gown, mask, and gloves at 2am, I'm wondering whether I'll be getting any sleep at all.

But of far, FAR more concern to me is the possibility of Daniel actually having contracted something serious with his immune system so weakened.  In all honesty, it's been a real test of faith for me to stay strong about this and keep my eyes focused on the Prince of Peace.  Blood tests and nose swabs won't have results back for at least 24 and probably 48 hours.  His temp is down a little (99.8) but still not back  to normal.  His heart rate has remained elevated and even as he sleeps next to me is still reading 140. I don't like that either (below 100 is closer to normal).

So the next couple of days are going to be critical in seeing whether this is just a minor bug, or something more major.  Fighting a nasty flu bug is bad enough with a healthy immune system!  Obviously, we covet all the prayer we can get. 
   - For God to be glorified in all this and for His will to be done in our lives
   - For complete healing
   - For quick, clear test results
   - For us NOT to catch anything new here at the hospital
   - For no mistakes and good care here from doctors and nurses
   - For Daniel's mental state and perseverance
   - For Andrea and I to stay strong, healthy, and remain a positive example and provide wise counsel to Daniel
   - For us not to miss any opportunities we may have to witness or serve others while we're in the midst of this.

A HUGE thank you to all our friends and relatives who have been walking this path with us - whether in person or "virtually".  We covet, FEEL, and thank you for every prayer.

Ultimately, we rest in the knowledge that God keeps His promises.  "And we KNOW that all things work together for good to those who love God, to those who are the called according to His purpose." (Rom 8:28).  So we thank our loving Father in ALL circumstances ... including this one ... knowing that ultimately He will work this into a plan for His glory, for our good, and that will somehow benefit others.  We may not see that good yet in this life - you never know.  But when we consider what all this might look like to us in 100 or 1000 or even a million years from now - we can be absolutely certain that the "inconveniences" of this lifetime will be remembered only for the extent to which we allowed God to use them in our lives to shape our character (which of course we will take with us into eternity) or to bring Glory to Him.  We pray only that we will trust Him enough to lead us through these valleys in such a way as to maximize the benefit - whatever that may be - of these trials.

To God be the glory both now and forever.  He is always worthy.  We believe and trust in You Lord. Help us to believe and trust You more.

Grace and peace to all,

- Tim -

Mirrored on our CaringBridge site here: http://www.caringbridge.org/visit/danieljmiller/journal