28 February, 2011

Another Monday Clinic

Nothing bad to report, all appears to be proceeding according to plan. Robert's ANC is the lowest yet, meaning that his immunity more compromised than ever. He was able to get outside in the sunshine yesterday. It was 75 and beautiful, and we believe fresh air helps all. After a few laps on his bike, we switched to just sitting outside. His red blood counts are getting low and he tires easily. We expect another blood transfusion next week.

22 February, 2011

Long Day

Yesterday's clinic was a 9 hour affair. I started out at the clinic with Robert and Kasie but had to leave early for my first out of town work trip post diagnosis. It was hard to leave, even harder to leave him in a hospital bed, but it was time. All went well, Robert's counts were better than expected. As we resume the chemo injections at home, we will wait to see if the fevers return.

15 February, 2011

2/15/11 Be My Valentine

Chemo clinic had a little drama yesterday, but ended well.  What was intended to be one of the quicker visits, turned into most of the day.  Robert has been quite sick all week, which led the doctor's to running enzyme and pancreatic tests to ensure everything is as it should be.  It seems that it is, this is just normal chemo side effect sickness, but if it continues they will check again.   The next installment of terror came when Robert cried with pain as they injected chemotherapy into his port.  The port ties directly into the superior vena cava above the heart, allowing meds to enter the blood stream directly.  Some medicines like Vincristine (chemo) are  vesicants, which mean that they can cause excessive tissue damage if they escape from the vein.  Due to Robert's reaction to the Vincristine push, which he has had no trouble with before, it was decided that the port should be checked.  So down to the Radiology/ Fluoroscopy lab we went.  The injected a die similar to MRI contrast die into his port,as we observed everything on a real time xray (fluoroscope).  Although everything looked wrong to my "expert eye", the doctors assured me that everything looked normal, and no problems were found.  I must have pointed and asked to many questions. I know my son is at one of the best pediatric blood cancer hospitals in the country, but they're still gonna have to deal with me.  They may be good at looking at pictures, but lets see em' dovetail a drawer or cope crown molding.

The painful reaction to the meds will remain a mystery, under the guise of "lets see if it happens again next week."

I hope that everyone had a happy valentines day.  Below is Robert's Valentine box that he and his Mom made.  Of course he wanted a robot. They wrote valentines for all of his classmates, and made this over the weekend.  Kasie carried them to the school in the morning while we were in Atlanta, so that he could still participate in the goings on.

08 February, 2011


We had a very long day at clinic yesterday, but all went well and we were able to come home. Robert's white counts are very low, and will stay that way for a little while. This mandates that we be extremely germ conscious. His red counts were also low, so he received a blood transfusion as well. It's amazing how a bag a blood can bring his color, energy and spirits back so quickly. This new, stronger round of chemo is making him sicker than the previous, but we are all celebrating the fact that there are no shots at home this week.

05 February, 2011

2/5/11 "Yinzers"

The fevers seem to have subsided for now, and Robert is feeling better.  I am grateful that we have clinic on Monday and he will get a good once over.  Now we can relax a bit, and have an enjoyable weekend.  Since no one is allowed over right now, we are stocking up for our own Super Bowl party.  Robert refuses to take off his vest today, excited about tomorrow's game.  As Steelers fans, this is a welcome distraction from everything.  As you can see, his swelling his gone down quite a bit, during this steroid break.

Enjoy this inspirational yet equally educational video.

02 February, 2011

2/2/11 Fever Pitch

The doctors are trying to determine the cause of Robert's high fevers.  The purpose is to ensure that there is not an unattended infection that his body is unable to fight on it's own.  One of the chemo treatments that we give him at home, has a common side effect of a fever.  However, we just cant write that off as the cause.  Every fever event must be evaluated, to determine it's source.  And since he also has a hacking cough and some fluid in his lungs, it makes it even more difficult to casually attribute his temps to the meds.  As they spend a day running tests on his cultures and labs we have the go ahead to stay home, fever or not.  The course of antibiotics that was given him in the ER last night was about all that they could do for now, so we will wait it out. His temp has returned back to normal in the last couple hours, but its almost time for this same questionable injection again.  Will it start all over?  Hopefully through a process of elimination we can determine that these chemo injections are causing the spikes, and breath a little easier.


We've made it home, a surprise to all involved.

In the hospital

We've been at the  ER for a few hours now due to a high fever, probably from a viral infection. Robert is getting a course of strong antibiotics, and they are running lab work. The results of which will determine if we go home or are admitted.