Tyler’s Journey…

Two days ago the doctors told us that Tyler’s blood counts were coming back up at a rate that could send him home much earlier than expected for his break before the next course of chemo.  His neutrophil count had to be 200 in order to go home.  Yesterday his neutrophil count was 90, so going home today […]

Tyler’s time at home so far has been wonderful!!!  It’s been pretty physically exhausting, but mentally and emotionally he’s been on cloud nine.  Saturday he attended the Mt. Hebron High School homecoming game and was the honorary captain (he got to do the coin toss).  The timing of this was especially neat because the homecoming game […]

Late last night Tyler’s doctor called us with wonderful news!  The flow cytometry results of Friday’s bone marrow aspirate showed that the first round of chemo was very successful!  The number of leukemia cells left in his bone marrow is less than 0.1%, which the smallest number they can detect! We had been told to […]

My precious son turned 15 today!  Originally expecting Tyler to be hospitalized for 5-6 months straight, his being home just in time for his birthday was a major blessing. The day began inauspiciously with a trip to the lab for required blood work.  The not-so-clean waiting room was packed with people – standing room only.  Tyler graciously […]

Tyler has one more day at home, since they couldn’t get him scheduled in the OR for his central line today.  Back to the hospital at 8AM on Thursday!  We’re thrilled for this extra day.

Tyler has had a long day today!  After five amazing days at home, we left the house at 7AM, went to the outpatient clinic, then to OR, and finally to his new room on the floor.  Tyler had a Hickman catheter surgically placed, and another lumbar puncture.  A Hickman is a central line placed into one […]

Tyler has not felt well since he came back to the hospital on Thursday.  He’s not having the “typical” chemo symptoms, thank goodness, but just in general feels drained and miserable.  Ron’s recovered from his sinus infection, but now I have it, so I have had to stay away from the hospital since Saturday evening.  This has triggered one […]

I was finally well enough to see Tyler yesterday evening!  Praying I stay healthy for a long, long time so I don’t have to go through that separation again. Tyler still feels bad; he’s nauseated and is getting sores in his throat.  It’s hard for him to eat/drink, but he’s determined to eat at least one […]

Tyler’s been back in the hospital for ten days now.  He completed his three IV chemos on Friday, but the cumulative effect continues to build in his body.  With this second course, he is getting closer to receiving the life-time limits of these very damaging drugs. The past two days he’s been in significant pain from a particularly […]

Oh boy.  Oh boy.  Things can sure change quickly on a cancer ward.  Since Tyler’s first course of chemo, we’ve been warned about the symptoms that could develop; one of those symptoms is a condition called mucositis.  We were so blessed that during his first course, Tyler only had the mildest case – some annoying sores in his mouth.  […]

Tyler had an NG tube placed a few hours ago.  That was a trauma neither he nor I is ever likely to forget, made much worse by the pain of his mucositis.  Now that it’s done, the hope is he will have relief on the horizon.  He will get all nutrition via the tube, as […]

The past 24 hours have probably been some of the worst of this whole ordeal, and that’s saying something.  After how horrible the NG tube placement experience was yesterday, I immediately started internally fretting about how he was going to go through it again a month or so from now during his next course of chemo.  Then […]

The rapid cycling of good things – then bad things – then good things happening in one day is making me dizzy!   The day started off great, with Ty finally getting his chemo and some nourishment through his new NG tube.  Unfortunately, he felt terrible and remained in pain.   There’s no way I can describe how […]

It’s strange to be saying Tyler seems to be turning a corner when he’s still as sick as he is.  In addition to the problems of earlier this week, he’s now considered a “falls risk” given his extreme weakness.  He also has broken out in a rash on his legs.  They suspect it’s folliculitis.  Because the hair is […]

Quick update from this morning’s entry:  turns out the rash (which now has spread over his entire body) is grade 3 skin toxicity related to the sorafenib, not folliculitis.  Grade 3 is the highest level of toxicity, and means they had to discontinue his treatment for a few days. The blisters are worsening on both Tyler’s palms […]