some info on PET scan results

Chris didn't have any fevers last night.  His hemoglobin is down so he got two units of blood transfused today.  He has also been on a blood pressure med since it has been high yesterday and this morning.  He had an ultrasound done on his left arm this morning.

He is scheduled for his bone marrow biopsy with sedation on Thursday.  His procedures/tests had to be re-scheduled since they were set up as out patient but he is now an in-patient since he was admitted on Saturday.  The nurse practitioner in charge of scheduling is working on getting his MRI scheduled as well as an echocardiogram.  

Dr. Michael Rytting was the doctor doing rounds today that was assigned to Chris.  I googled his name before he came by and he specializes in young adult acute lymphoblastic leukemia/lymphoma.  Even tho this waiting game is hard and frustrating it is good to know that he is at the #1 cancer hospital in this country and the doctors he sees specialize in his specific disease.  

Dr. Rytting is thinking that he fevers are due to his lymphoma.  He told us that the PET scan results were in and they confirmed what we suspected, that the cancer is still there in his throat area; this obviously means he is not in remission.  Patients on the chemo regimen he is on (hyper-cvad) usually achieve remission after two rounds of chemo, Chris has had five rounds.  Since Dr. Rytting is not Chris' doctor, that is Dr. Thomas who we saw Thursday, he doesn't have many answers for us.  Dr. Thomas will hopefully be by to see us today or tomorrow.  More waiting.  Dr. Rytting did say that patients who are not in remission at this point in the hyper-cvad regimen are typically switched to another type of treatment.

Dr. Thomas will be the one who will go over the PET scan results in more detail and recommend a new course of treatment.  I am guessing that she won't be able to give us a complete picture or answer to our questions until he gets all the recommended tests done and she is able to analyze the results.  

We obviously have more questions than answers at this point and more waiting to do before any of them can be answered.  I don't know exactly what it implies or means, that his cancer is not in remission.  It is obviously not good and changes his prognosis, just how much I have no idea at this point.  We kind of already knew that the PET scan was going to reveal that the cancer had not gone away.  But having a specialist tell us that, and the fact that it is not typical for most patients with his disease getting the same chemo regimen, is entirely different.  

So many questions and nothing to do but wait.  I am thankful that we are at MD Anderson for this diagnosis and treatment recommendation.  It is such a large and wonderful facility.  His room is spacious and there is a comfortable couch that pulls out into a wider couch that I can sleep/nap on.  I realized today that I can order room service food as well.  I still have to pay for it but when I don't want to miss seeing a doctor making rounds at an unknown time it's better to order it to the room than travel from the 16th floor to the first and wind my way around the building to the cafeteria and then come back.  There is even a smaller tv mounted on the wall next to the couch for me to watch, so then I don't disturb Chris.

He is still very tired but he did finally eat solid food today!  I got him to order chicken noodle soup and macaroni and cheese.  He also got 3 scoops of rainbow sherbet and ate nearly everything.  

Hearing that his PET scan came back showing that the cancer is still there was hard for him to hear.  He's already feeling so physically exhausted so I can't imagine how disheartening hearing that news is for him.  He's ready to leave the hospital but they are not planning on discharging him any time soon, they want to get the tests done first.  I'm guessing that the earliest date he'll be discharged is Friday.  

Taking it a day at a time is often something I have to adjust myself to doing daily.