Thursday, March 4, 2010


So far Kyler has done really well. He started getting nauseated from the chemo night before last (tues night) and has thrown up 3 times. He seems to feel good though. He plays and laughs and has actually done a few things since we've been here that he didnt do before. He pulls up onto his knees in his bed and has almost pulled up onto his feet once. He now says "Yeah" which has become his new answer to everything instead of "No-no" like it was LOL :) He is able to play on the floor without his helmet here so his mobile skills are getting much better. They came and scored him and he scored 10 months on mobility and 12months on verbal and understanding. The nurses all love him and he does so good with things that they said most kids fight against like: Vitals,mouth care, and drinking the nystatin. He had a bad night the first night but only bc he wasnt use to having fluids flowing through his line and he didnt like the taste or feel of it. Since then he has done great with it. He sits in his bed and plays during the 2 hours of chemo and doesnt fuss. Its like he understands when I tell him he needs to sit there and play so that the monitor will pick up his heart rate and oxygen levels good. I am so proud of him. I love him so much.
Now some medical things. Tomorrow is his last day of busulfan and then we will start cytoxin then ATG. He is currently on acyclovir to help prevent viruses, dilantin for seizures, zantac for reflux, zofran for nausea and benadryl as needed for nausea. His counts are as expected. I will try to update next week or so. Please keep him in your prayers.


  1. Strong Strong Kyler! You are in our prayers each night and even throughout the day. It is very hard to see your child uncomfortable or in pain, but this is all for a great purpose!

    How you you doing Jill? And daddy? Stay strong!
    xxxx Kami

  2. Glad that things are going well; praying daily here.

    If I can offer a reminder as someone who had the pleasure of undergoing chemo (including cytoxin) myself among many other complicated medical procedures down through the last 20 years and has two nephews who underwent BMTs, keep yourselves sharp and do not hesitate to question the medical folks as they execute their tasks, from the docs up top to the phlebotomist coming by in the middle of the night. They're all professionals but they are human and can make mistakes...and sometimes the system itself can be the culprit. My IVIG, scheduled a month ago, didn't happen today because two very good oncology facilities staffed with very sharp people dropped the ball on ordering the right medicine.

    If any of the folks involved does anything that strikes you as 'off' or not regular or not expected, ask them what and why. As professionals they won't take offense at a parent's concern for their child's welfare.


  3. Hi Jill,
    Glad things are going well. It's really great to have your blog as we are literally piggy backing you...we are at Day -8 now for the cord blood transplant. We too have a blog (not sure if you knew?
    And I completely agree with Bob - do ask for clarifications and reasons - I have already had to remind the nurses (and Dr's!!) on things!.
    Hope Ky continues to do really well, Love Bee xx

  4. Hey guys! Thank you all for your prayers. Bee,and Bob..Yes I have DEF been keeping up w everything. My pharmacy skills have came in handy bc I have written down the types time and doses of all his meds and its good that I already know what they are/ side effects, uses etc. I check behind the nurses and ask them ever time they do something what it is.I even get up at night to check. The other day the monitor said it was giving a med instead of flushing so I went and got the nurse to check and it was flushing he had just left it on the setting for the med, which was fine but I wanted to be sure.I even watch them to makes sure they clean the caps and valves good before the use them LOL. I know they prob think im trying to do their job for them some times but they are all so nice about it.:)

  5. Cindy kept a notebook charting everything when our AJ had his BMT. It gave us peace of mind. I don't think the nurses care, in fact I think most appreciate parents who are involved and are knowledgeable. Also it's good practice for when Kyler gets to go home.