August 11, 2001

Update #1

Good Morning,

Thought I'd catch you up on things.  I don't remember when you've been contacted last.  Jeff came home late afternoon 7-30.  Tues. and Wed. were out-patient and he did not get sick since they changed Zofran from liquid to pill.  Thurs. the 2nd was home and the local home health called Heartland Home Care made their initial visit.  Dianne Catlin is his nurse, also the mom of a girl in our youth group (Amanda is his friend Tim's girlfriend).  He got his first neupogen shot to build up the white cell count.  (We all have to learn to give the shots.)  Fri. the 3rd was the last out-patient for the first week of chemo.  He also started with Thrush in the throat (common) but after the week-end nurse came and she contacted Cardinal Glennon (hospital in StL) we started on Nystatin , usually referred to as Swish and Swallow, which helps kill Thrush on contact.  Thrush was gone by Mon. night.

Sun. night at bedtime I noticed his entire back broken out with acne - a side effect of the Prednisone he took during chemo week.  Doesn't bother him and he really enjoys Mom having to now wash his back really well!!

Monday the 6th was Mom's day.  I gave my first solo shot of neupogen to Jeff.  Practicing on an orange is one thing but when you pinch your son's leg it's totally different.  I also started my part of daily flushing his PIC line with Heparin and changing the valve and cap on the PIC line three times a week.  Mon. he also started Bactrim three times a week for the entire 6 months to ward off pneumonia.  Jeff has also had some jaw pain but is a side effect of a chemo drug called VCR.  Almost gone now. 

I have a calendar book which I have to fill out daily with what is done, what is given, what side effects occur and also BM's.  I bring the last one up because we have been battling constipation since Wednesday.  I don't think Jeff has ever had this before and he is miserable.  They want to take things slow in getting him moving because diaharrea can be worse with dehydration.  Poor baby takes turns between bed and the recliner in the living room.

We were able to get his Senior pictures taken as scheduled on Wed. the 8th.  Still had hair and they also did a family pic for us for the church directory in Oct. and Nov.  Heartland (home care) also took his pic Wed. AM for a newsletter this Fall.  

Thrush began again yesterday, this time inside the cheeks, so he's back on Swish and Swallow.  Also yesterday, he really noticed hair coming out more.  He decided to get his hair cut today.  Not sure how short he'll end up going but I guess we'll find out.  He doesn't know but I cried last night  after I put him to bed when I thought I'll miss the smell of his hair when I kiss him goodnight.

We have things worked out at school and he's thrilled because he's OUT of PE.  Got all the other classes he wanted.  A retired teacher (member at church) will tutor him at home when he's not up to going and will also sub for me when he has in-patient days.  Ken and I worked at school and got high things up on the walls.  Today we hope to unpack some boxes.  As school gets closer, I don't want to go.  I just want to stay home and be close to Jeff.  They say keep things as normal as possible.  Ken says Jeff will be in school too so I might as well start out normal we'll take it from there.

Overall, things ARE going well.  They are pleased with blood counts, he's had no fever or MAJOR side effects to send him back to the hospital.  Mike and family are coming tomorrow and leaving Tuesday so he's looking forward to that.  This sickness has hit his class hard.  He's had several visits, many cards, even food from one girl.  Everyone is very supportive.  These prayers are definitely working!!  The corner of the living room has 11 balloons, 2 plants, stuffed animals plus a bag from Iowa.  Wartburg sent him everything he would have gotten if he had gone to the broadcast workshop.  Even a complete refund of money - we gave that to him since we said we had considered it spent.

Well, I guess that sums things up for you guys.  I might (try) do this once a week and keep you up to date on Jeff.  You might be finished reading this by Noon!!  Hugs and kisses to all.

Love,

Marcia