New Phase - New Challenges

(Mirroring our latest Caring Bridge post from: http://www.caringbridge.org/visit/danieljmiller/journal )

My apologies for not having given more updates recently.  I’ve been really tired lately and struggling just to keep up with keeping up.  Tuesday marked the end of our 10-day mini “vacation” between phases of chemotherapy – a vacation that saw us in the emergency room twice with mysterious fevers OBTW!   Tuesday was another long day at Riley as we began the “Consolidation” phase which will last for about 2 months.  This phase has Daniel on 6 different types of chemotherapy drugs and a few others used to help control side-effects from the severely nasty poisons being pumped into his poor little body.  A few things are new in this phase, one of which is the lack of steroids that caused his appetite (and weight) to go crazy during the first phase.  He gained 12 lbs in just 4 weeks!  So we’re thankful that part is done for the time being.  But now have new issues with which to struggle.  

During our brief break, Daniel began developing sores on the inside of his mouth. We’re getting mixed reports as to their cause, but I’m pretty confident they are a direct result of one or more of the chemo drugs.  There are 5 or 6 good-sized sores on his tongue and gums that really hurt when he opens his mouth or talks so, as you can imagine, his eating has dropped completely to the other end of the spectrum from just a week ago.  He’s also struggling with stomach pains.  Nausea is a common, and can be severe, side-effect of a couple of the drugs, but I’m not entirely sure what’s to blame.  At this point, they could be from not having eaten at ALL for long periods of time (he often has trouble distinguishing hunger pains from nausea), or gut cramps from constipation, or nausea directly from the drugs.  We have him on a scheduled anti-nausea med, but it remains to be seen how well this will help.

The other really new thing for us now is having to administer one of his chemo drugs at home through his “port”.  The port is a small plastic & rubber contraption planted under the skin and muscle of his chest just above his heart.  It appears as a small lump in his chest with a good sized scar above it.  When they draw blood or administer drugs, they put a single needle through the skin into the port and then use it for everything going in or out.  This avoids having to abuse the veins in his arms & wrists over and over through this process.  Usually, the “access” his port when we arrive at Riley, use it all day, then pull the needle out as we prepare to leave.  But now, they’ll be leaving the needle in and covering it with a large, clear, protective bandage with just the tube hanging out & taped to his skin.  We go into the clinic each Tuesday for the two months of this phase.  For the first two weeks of each month, they will leave the port “accessed” (needle left in) when we leave and it will stay in for another 3 days so that we can give the chemo drug at home for a total of 4 days in a row each time.  

An organization called IU Home Healthcare came out to the house last night (Wed) and the nurse taught us how to go through the whole procedure.  It’s ridiculously complicated requiring the anti-nausea med, the chemo drug itself, and then a dose of blood thinner to keep the port from clogging, with a syringe of saline solution before each for a total of 6 syringes along with special gloves, alcohol wipes, disposal procedure, and a “spill” clean-up kit that is literally a Haz-Mat kit that looks like it’s from a nuclear power station emergency procedure.  The warnings, procedures, and equipment that come with this chemo drug (Cytarabine) are really scary – yet we’re pumping our little boy full of this stuff every day now.  “Mixed Emotions” doesn’t begin to cover how I feel about it.

Daniel’s been very, very tired since starting the new regimen and I’m pretty sure it’s simply his body using all its energy trying to deal with the poison being injected into him.  But he’s also had a low-grade fever that we’re watching closely as well.  Again, I think it’s simply his body trying to keep up with the treatments. 

On the positive side, his last set of blood counts showed his white cell count (a measure of his immune system health) being well into the middle of the normal range.  You may recall that we hope to see this number over 1000.  1500 is the bottom of the “normal” range, and it goes up to about 8000.  On Tuesday, Daniel’s was 4000.  So, as he has energy, we’ll be trying to get him out & about.  Two months of almost no activity & laying around in bed all day is taking its own toll on both his physical and mental health.  My conundrum though is two-fold; I want him to get out of the house and get some exercise, but on the other hand, (A) it’s cold and flu season and even perfectly healthy people are sick all over the place and that, of course, is the last thing he needs.  And (B) the last two times he’s had visitors over, we ended up in the Emergency Room both nights with high fevers.  I’ve since become convinced that these were NOT due to infections (the fevers only lasted a few hours and came on too fast to have been infections), but rather were simply from over-exertion.  So we need to be cautious about how much to “push” him in getting some activity back into his life.  We probably have only a week or less before we expect his counts to drop again from the new round of drugs (I refuse to call chemotherapy “medicine”!)  Once they fall again, we’ll be back to quarantine and more careful food regulations.  

So far, I’ve been able to make up all the time I’ve had off from work attending doctor clinic visits with Daniel, but I’m not sure I’m going to get it all made up this week.  I’ve got a list of things piling up at home that need to get done and I feel like I need about a week of sleep (though undoubtedly that’s mostly stress-related), not to mention simply wanting to spend time NOT at a hospital with my family.  Andrea and I do most of our talking through text and instant messages and I can’t remember the last conversation that wasn’t about medical, health, or home maintenance issues.  We wouldn’t even have known it was Valentine’s Day had the nurses not brought Daniel some valentines cookies & a couple of gifts.  Andrea did get to buy herself a very nice necklace however since there just happened to be a big jewelry sale in the hospital lobby that day.  It was nice to see what I bought her afterward!  :-)

Andrea continues to struggle with her own health problems.  She’s been fighting off a cold for several weeks now and had trouble sleeping last night due to on-going joint pain.  She’s got a lot on her plate right now taking care of Daniel during the day and trying to keep up with the house despite her own leukemia, severe lack of energy, and other health issues.  She’s doing a fantastic job, but the stress is taking its toll on all of us.

This coming Tuesday (2/21), I’ll begin teaching a new evening course through the book of Genesis for 8 weeks.  I’m REALLY looking forward to it for lots of reasons, but also realizing it’s going to be a real challenge to keep up with everything else going on too.  I believe strongly that God has brought me to this decision and will see us all through it, but it’s definitely another leap of faith to add this log onto the fire right now.  

We remain eternally grateful to our “Wonderful Counselor” Who has kept us firmly in His care, prevented us in all ways from being tested beyond our endurance, and promised that “A.L.L. things work together for good…”  We also send our sincere and abundant thanks and love to so many family and friends, including many new friends we’ve never even met, for all you have done for us and continue to do.  We are constantly encouraged and lifted up by your prayers, notes, comments, and support. Again – thank you!

PRAYER REQUESTS:

1.   Complete and total health & strength for Daniel – Body, Soul, & Spirit

          Specifically:

          a.       Rapid healing of mouth sores
          b.      Better energy levels
          c.       Protection from infection
          d.      Freedom from nausea, fever, & other side-effects of chemo drugs
2.       Health and energy for Andrea – Body, Soul, & Spirit
3.       Help for Andrea with household chores
4.       That I would continue to stay in good health and be able to keep up with, well, everything
5.       Spiritual protection from the warfare that always comes with me starting a new Bible class
6.       That we would all draw closer to our Lord Jesus Christ through these trials and learn what lessons He has for us.
7.       That He would ultimately be glorified in all we do and all that happens.

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