February 2003 Updates
2/28/03 Update
Ben seems to be doing better today. His fever broke last night. He is all puffy from the IV fluid - he is still a little sluggish, but smiles quite often.
They diagnosed the bug as 'coagulase negative staph'. This is a very common and normal body flora bacteria - Ben 'caught' it from himself because of his poor infection fighting abilities from the chemotherapy treatment. He is actually not contagious to anyone else. They are treating it with Vancomycin which is an antibiotic that is suppose to target this bug. In addition, they still have him on the broad spectrum antibiotics Gentamicin & Cefepime. He will most likely be discharged from the hospital sometime tomorrow. We will give him IV antibiotics for the next 10 days via a home program. His counts look good (coming back up from a low of 140 ANC on Wednesday to around 960 ANC today).
2/27/03 UpdateLittle Ben had a 102°F fever last night. Carolyn took him to the emergency room and they admitted him to the hospital. Since he had chemo last week he is very neutropenic (meaning his white blood neutrophils are at a very low level and therefore his infection fighting abilities are extremely diminished). He does not seem to have a cold and his fever is staying high so they (Phoenix Children's Hospital) are worried.
A blood culture today showed that he does have a bacterial infection in his blood. This is a bacteria that normally exists in everyone's GI tract, but becomes a problem for people who are neutropenic and cannot fight it off. It is not something he caught; he essentially caught it from himself. It can be a serious situation, but there are antibiotics that can target this specific bacteria. He started the antibiotic today, but he had an adverse reaction to it (bright red rash). This is not uncommon and they gave him benadryl and will slow the administration of the next dose to hopefully avoid this reaction. Ben will be on antibiotics in the hospital until he has no fever and his blood counts come back up. He will be in the Hospital until AT LEAST Saturday morning but possibly longer.
Side note: Taking an immunocompromised child to an emergency room, where everyone is very sick, is a very difficult and stressful task - you are worried that the child is going to get even more sick in the process. We wish there was a better option.
Here are Ben and Marie last week. Ben absolutely loves to brush his teeth - he cries when he has to stop.

2/17/03 UpdateBen's counts were high enough to get chemotheraphy today. So, this week he is getting his 9th course of 2CdA. We will go into the clinic five days in a row this week.
2/7/03 UpdateGood news today - Dr. Etzl called with Ben's scan results and everything is the same size, nothing has gotten bigger and there are no new areas. The best news is that his largest lung nodule seems to have disappeared! Hopefully on the next scan we confirm that it is really gone (we have learned the hard way to not assume the results are exactly as they first seem). We are going to try for chemo again on the 17th.
Sit & Spin...

Marie, Ben & Mama went to the zoo, this snake got 'em and we have not seen them since...

2/4/03 UpdateNo MRI scans today because the MRI at PCH was broken. So we are rescheduled for this Thursday 2/6. This was a bit disapointing because we are anxious as usual and we did go to the hospital today for the scans. We did get the CT scans done today. We expect to hear the results from Ben's doctor for both MRI and CT scans on Friday.
The big man in the front yard...